No Stone Unturned: Seeking Optimal Cancer Care

The Jenifer Altman Memorial Lecture

Commonweal – November 23, 1999

Presented by: Mark Renneker, M.D.
Assistant Clinical Professor, Department of Family and Community Medicine,
University of California, San Francisco

…this talk dedicated to David Schickele…

[Note: this is a 12/11/99 corrected draft of the handout from the talk, for use by Commonweal. It is targeted to the generally highly medically sophisticated Commonweal community, in the Bay Area.]

Goal: To provide the members of the Commonweal community (patients, family and friends, health professionals) with practical information and strategies for achieving the best possible, most comprehensive cancer care.

Background: I have developed a San Francisco-based private medical consultative practice which, since 1988, has provided intensive research and advocacy services to hundreds of patients, family members, and other health care providers. Referrals come to me from all over the country, and sometimes internationally, largely by word-of-mouth. Although my practice is named “Patient-Directed Consultations,” my nickname has come to be “The Medical Equalizer,” in that I provide help to people who are in a medical situation where they can’t seem to get the help or information they need. Most all of my work is by phone, mail, fax, and electronic means. I do not bill or work through insurance companies or health plans; patients pay me directly, on a sliding scale. From when I first began this practice, there has been far greater demand for my help than I can provide; unfortunately, there are an untold number of patients needing these kinds of services. I am hopeful other health professionals will move into this field.

I do not assume care for patients; nor do I treat them, in the conventional sense. I provide personalized medical research, highly specialized information, and help in making decisions based on that information. I seek to work within the patient’s existing structure of caregivers; only rarely does my work lead to confrontation – it is about enhancing and building bridges between people. I am empathetic to both physicians and patients: the world of medicine has become so complex, time so scarce, reimbursement mechanisms so confining.

About half of the cases I work with are cancer-related, most often dealing with high-risk, recurrent, and metastatic disease. Non-cancer problems are most often rheumatic, endocrinological, immunological, neurological, and pain-related. 93% of all cases are in adults, the average age 52, and 2/3rds are female. Patients have already seen or worked with 6 physicians on average (range 1 to 30), 90% are from outside of the Bay Area, 50% are themselves M.D.’s, PhD’s, or lawyers. Family members are on the line about 60% of the time (e.g., conference call); 2/3rds have tried alternative or complementary therapies – the other 1/3rd want to.

The general approach I take in my practice is to try to put the patient (and family) in charge of their overall case (and health) by learning to be in charge of their case with me (i.e., patient-directed consultations). To accomplish this necessitates, from the outset of the work, my going to where they are, meaning that I need to do everything possible to understand their feelings, fears, confusion, frustrations, hopes, and desires, as well as their physical symptoms and suffering; I need to take up their side in dealing with the disease, their doctors and the health care system – my alliance, my bond, is to them, less so the profession. I find that doing this work by phone actually facilitates empowerment and intimacy (e.g., their being at home (not in some doctor’s office), using such a familiar communication medium as the telephone – which many of them use professionally and with great authority).

The circumstance in which a patient decides to ask for my help is often when the treating physician has reacted negatively, indifferently, too briefly (the most common problem), or not at all, to a patients’ questions about and interests in additional or different therapies–whether they be mainstream, experimental, complementary, or unorthodox. Every patient wants to know that everything possible is being done; they can’t help but wonder if there aren’t treatments somewhere else they might learn about and consider. I find that these needs of patients and their families are usually met once time is spent investigating and discussing with them the therapy or therapies under consideration, and how those therapies may be pursued , practically and safely. In my experience, once fully educated about a new or perhaps expensive therapy (i.e., bone marrow transplant), very few patients will inappropriately want it (counter to the prevailing fears of managed care organizations).

In addition to patients not receiving enough time from their physicians, the other general problems I commonly see are: family ignored, under-treated pain, incorrect or absent diagnosis, no prognosis given, hasn’t consulted elsewhere, and false hopelessness.

Specific areas that most often need to be addressed include: (1) completeness and accuracy of the medical record, (2) additional tests, consultations, and research that may be needed, (3) mainstream, experimental, complementary and alternative treatment possibilities, (4) nutritional and physical considerations (including exercise, sleep, and sexuality), (5) psychological, spiritual, and family considerations, (6) primary, preventative, and wellness care, (7) quality of life, pain and symptom control, end-of-life planning, (8) quality of care to date, (9) communication with health care providers, (10) advocacy within the health care system.

Stones Often Unturned in a Cancer Case

  1. Completeness and Accuracy of the Medical Record

    It is imperative for the patient (and me) to obtain the complete medical records. Most patients have not examined their complete medical record. At most, usually because they wanted a second opinion and needed to bring key documents, they were provided with a pathology report of a biopsy or surgery, imaging reports, and sometimes tumor marker reports. It can be a real eye-opener to read the various physicians’ complete written medical history and their impression or assessment of what should be done. The factual errors and omissions of important facts (that may have not been elicited in the first place) can be crucial at the outset of a case: because they are in writing and are in the bedrock documents, if they are incorrect, those errors often will carry forward – later physicians may just copy them into their records. For instance, errors as to where a tumor is (i.e., left or right lung), tumor markers, potentially relevant etiologic factors (family history, exposures), results pending that never made it into the medical record; speculations or cautions from a radiologist or pathologist that you were never told, unfair characterizations of the patient (difficult, in denial) that may bias future physicians. I find the patient’s thoughts on what may have caused or contributed to the cancer often never makes it into the record, particularly if it deals with psychological/relationship/stress factors, intuition, nutrition, chemical exposures, or iatrogenesis (physician-caused illness).

  2. Additional Tests, Research, Consultations Needed

    1. Pathology/tumor testing:
      • it may not be cancer: all pathological diagnoses of cancer should be double-checked.
      • multiple primary cancers can pose as metastatic disease.
      • hormone receptor (estrogen and progesterone) and HER2 testings can be falsely negative.
      • molecular pathological typing is underperformed (HER2, p53, + numerous others).
      • tumor not examined by the pathologist is usually wasted by storing all in paraffin vs. cryopreserving it (freezing it) for later possible vaccine development or testing as new therapies arise [cryo facility: Cancer Therapeutics, in Franklin, Tenn. (1 800 964-6555 x 54046)- reasonable price, usually out-of-pocket; potential vaccine development via Charles Wiseman, M.D., in Los Angeles (1 213 484-7575)- no charge to see if can culture cells and make a vaccine, often sends availalbe cells/tissue for chemosensitivity testing].
      • tumor not sent for chemosensitivity testing(to get a better handle on what drugs are likely to work or not – better at saying what drugs won’t work than will). It is rarely done with a first surgery, but if there is additional surgery or a person develops lung or abdominal fluid containing cancer cells, consider sending for testing.

    2. Imaging and Functional Testing

      • PET (positron emission tomography): underutilized – a whole body scan similar to a bone scan, but it measures sugar uptake (most tumors love sugar) and is excellent for finding metastatic disease or differentiating tumor from scar/fibrosis. [finally, UCSF (Dr. Gary Caputo) has a PET scanner, an exellent one that can resolve down to about 3-4 millimeters (476-1521)]
      • MR Spectroscopy: excellent for evaluating brain tumors, especially after prior therapy
      • Spiral CT: quickly proving superior to standard CT, especially for evaluating the pelvis, abdomen, and chest.
      • immune function testing (i.e., natural killer cell activity, T and B lymphocyte function, skin testing): rarely done, but can be a reasonable means to assess if immune function is sub-optimal or not being adequately boosted by a vaccine, supplements, or herbs. [Consider sending blood to Immunosciences, in Beverly Hills, Ca. (Dr. Vojdani, 1 800 950-4686), Specialty Labs, in Santa Monica, Ca. (1 800 421-4449), or AAL Reference Lab, in Santa Ana, Ca. (1 800 522-2611) – need a doctor to order for you].
      • metabolic and functional testing: post-surgery/chemo/radiation gut problems can sometimes be due to dysbiosis (overgrowth of abnormal gut bacteria), which can be easily diagnosed and treated; assessing and improving liver detoxification pathways and antioxidants may lessen toxicity from chemotherapy; measuring serum and intracellular levels of anti-oxidants and vitamins can guide supplementation
      • thyroid testing: hypothyroidism (low thyroid) is sometimes associated with cancer and its’ treatment. Testing for it is often not done, despite a cancer patient having symptoms of hypothyroidism (usually fatigue, most often erroneously blamed on the cancer). Auto-antibodies to the thyroid, causing hypothyroidism, may be associated with a better cancer prognosis. Need a doctor to order for you.
      • bone density testing: having cancer, and receiving chemotherapy, can weaken bones. The disastrous complication of a hip or spinal fracture can be avoided if osteoporosis is diagnosed early and treated (e.g., 1500 mg. calcium/day, 800 mg. vitamin D, consider nasal calcitonin spray; consider oral bisphosphonate therapy with alendronate (Fosamax), etidronate (Didronal), risedronate (Actonel), or IV therapy – especially if at-risk for or presently have bone metastases – with pamidronate (Aredia) or soon-to-come zolendronate. Bone density testing usually requires a doctor’s order, but not always.
    3. Research Needed:
      • most patients are under-educated about cancer in general, and their cancer specifically. Most have not read a well-researched, detailed overview of their cancer, and the Internet rarely has as complete or accurate information as, say, Vincent DeVita’s standard cancer textbook: Cancer – Principles and Practice of Oncology (now in 5th edition, 1997), available at the Commonweal Library, Planetree Resource Center (2040 Webster St., SF, 923-3681), and UCSF medical library. I’ve found that the primary reason a patient won’t read about their disease is fear of coming upon negative information, particularly prognoses and fatality rates. If that is so, then that problem needs to be worked on, discussed, brought out in the open. The antidote for such fear, ironically, is information.
      • a basic Medline search is needed to get a general idea of what kind of new work is being done, where, and by whom. You are looking for who or where in the world is most interested in your tumor or problem. Various commercial computer search companies exist, but often are not on-point (too broad a search, too much “junk” information). It can be fairly easily done via the Internet by someone (you, friend, or family member) with basic computer literacy. Go to one of various medical websites that link to the National Library of Medicine’s Medline, and search under your tumor type (to not cast too wide a net you’ll need to figure out the key search words: “neoplasm” (vs. cancer), type of treatment (“chemotherapy,” etc.), years you want searched (last 3 years is often enough for common tumors, go further back for less common ones), and type of articles (“review” articles are often most helpful to get an overview but won’t have cutting-edge information). Prepare to spend a few hours sorting through the information – it can be quite dense and heavily abbreviated. Keep notes.
      • PDQ (Physician’s Data Query) via the National Cancer Insitute, is a computer-data base of largely chemotherapy – and some immunotherapy – protocols in this country, as well as in Europe, South Africa, and Australia. It is updated monthly. For some tumor types, say metastatic breast cancer, there can be well over 100 protocols listed. Going through a complete listing of PDQ protocols (including a general description of the protocol, inclusion/exclusion criteria, enrollment information) can take a lot of time (it takes me about an hour per sixty protocols) – oncologists rarely have or take the time to regularly and thoroughly do it; they tend to rely more on annual meetings to learn about new therapies or new treatment protocols.
      • non-PDQ protocols: what is disconcerting is that many treatment protocols are not listed in the PDQ, usually because the institution or investigators offering it feel they will have no trouble attracting enough patients locally just by word-of-mouth because their therapy is that exciting. Finding out about those protocols takes reading cancer center’s newsletters (I’m on many such mailing lists), reviewing the Pharmaceutical Research Manufacturer’s of America (202 835-3450) newsletters (listing all the new biotechnologies), and, more often than not, stumbling upon an article in a newspaper (NY Times can be an excellent resource) or via the Internet (often from patient-centered sites). There is a lot of luck involved in finding such protocols, but “chance favors the prepared mind.” You may want to directly make contact with a biotechnology company – I recommend (and this may be true) that you indicate you are a potential investor, and ask for their portfolio.
      • the major professional oncology organization in this country is the American Society for Clinical Oncology (ASC0), and every May they have their annual meetings, at which upwards of 2500 presentations are made (mainly by poster presentation) on an astonishing array of subjects, but mainly on new types or uses of chemotherapy. The proceedings of these meetings usually are available in published form by April, are available at the meetings, and eventually are posted on the web (and are in Medline). Many patients may wonder why at the end of May or early June their oncologist is suddenly flush with new treatment ideas for them. It comes from these meetings; practically every oncologist (or one of their partners) attends. To review the proceedings – the many abstracts, but not usually well-indexed – is to come upon a gold-mine of information, ideas, and new developments to pursue or follow. Invaluable. I would estimate that 90% of oncologists actually read less than 10% of the proceedings. If you put forth an idea for yourself based on what you found in the ASCO Proceedings, most oncologists will have a difficult time not taking it seriously.
      • the most innovative cancer treatment strategies and results comes out of a different set of meetings, which take place every November, in New York City. Accurately titled “Innovative Cancer Therapy for Tomorrow.” Ezra Greenspan, M.D., has been putting this meeting on for years, and the presenters he invites are, for the most part, the shakers-and-movers and all the mavericks in the cancer field. There are proceedings for the meetings, and they can be obtained [call Jaclyn Silverman, 1 212 241-6772].
      • Complementary and Alternative Therapies: much harder to research, much of the information not in Medline (peer-reviewed journals) but on websites with possible commercial conflict of interest. Planetree and Commonweal have the best collections of books, reports, clippings that I know of, but other, more balanced reports are becoming available via various new journals, periodicals, and Web companies.
    4. Consultations Needed:
      • most cases haven’t been presented before a tumor board: a multidisciplinary board, consisting of a pathologist who reviews the slides, a surgeon or surgical oncologist, radiation therapist, medical oncologist, and other specialists as may be available (biological/immunological oncologist, nutritional oncologist or dietician, psycho-oncologist or social worker or psychologist, physical and rehab specialist). Private hospitals’ tumor boards are less often where true, unfettered-by-referral-economics discourse takes place; regional cancer centers are best.
      • second (or third) opinions are rarely a waste of time – each consultant seen will usually contribute to your case in some way. Try to choose persons who didn’t train together or came out of the same institution; it’s often best to choose the person known to be “different” or at odds with where or whom you’ve initially consulted.
      • among the various National Cancer Institute-designated regional cancer centers, I consistently find M.D. Anderson, Cancer Center (part of the University of Texas) in Houston, Texas, to be the best (1800 392-1611, option 3). It’s the most patient-centered, clinically (vs. research) driven, cutting-edge in terms of new therapies, practical (they work with your local physicians, most of whom are quite accepting of M.D. Anderson recommendations), accommodating (not a long wait to be seen), and inexpensive (sometimes covered by insurance but is usually less than $1000 out-of-pocket, which includes having your pathology slides reviewed, x-rays and scans independently read, a complete history and physical examination. Often you’ll have meetings with multiple specialists, your case presented before their departmental tumor board, and a complete report written). It has been an embarrassment that until the past year, UCSF was not been able to demonstrate inter-departmental cooperation sufficient to be designated an official regional cancer center (and Stanford still hasn’t). Mayo (Rochester, Minn.) and Memorial-Sloan Kettering (New York City) can be good for specific cancers, but many patients find dehumanizing and too research-driven.

  3. Therapies

    The way I think about comprehensive cancer therapy is that all the following therapies be actively considered:

    • surgery (which accounts for the most cases of cure – don’t forget that over 50% of all cancers are being cured in 1999, and surgery accounts for the lion’s share of those successes).
    • radiation therapy (including external beam, interstitial/brachytherapy (placing radiation-containing needles or pellets into the tumor), radiosurgery/Gamma knife, proton beam, radioimmunoconjugates (radiation attached to monoclonal antibodies), hyperthermia applications.
    • chemotherapy (usually referring to cytotoxic – cell-killing – therapy)
    • hormone therapy
    • immuno- or biological therapy (including cytokines such as interferons and interleukins, vaccines and monoclonal antibodies).
    • gene therapy
    • anti-angiogenesis therapy (and anti-growth factor therapies)
    • nutritional therapy
    • differentiation therapy (overlapping with nutritional therapy, it involves making the cancer cells “grow up,” i.e., turn into normal, mature cells
    • often using retinoid/vitamin A derived therapy.
    • physical therapy and rehabilitation
    • psychological therapy
    • complementary therapy
    • alternative and unorthodox therapy
    • the choice of no therapy
    1. Surgery:
      • missed opportunity with pre-menopausal breast surgery to schedule in accordance with chronobiology (surgery done during the second half of the menstrual cycle is consistently associated with a better prognosis).
      • metastectomies are underconsidered and underutilized (a metastectomy is the removal or ablation of metastases surgically, most often for single or limited numbers of discrete tumors in the liver, lung, kidney, brain, and bone). Rarely pursued by general surgeons, need a surgical oncologist (or, depending on site, a thoracic oncologist, urological oncologist, neurooncologist, orthopedic oncologist). Heat or cryoablation approaches with limited incisions possible.
    2. Radiation Therapy
      • few patients are being given the cell-protectant drug amifostine (Ethyol), which is a powerful anti-oxidant that protects normal cells; proven/now recommended for head and neck radiation, to protect salivary glands – will likely come into more widespread use for many other radiation therapy body sites. Injected before each treatment (200 mg/meters squared, few side-effects at that low-dose).
      • radiosurgery (i.e. Gamma Knife) underutilized for brain metastases. Whole brain radiation usually recommended first, despite greater short- and longterm toxicity (however it is usually the only option if a large number – more than 3 tumors – or greater than 2 – 3 cm. in diameter). If need whole brain radiation, the greater the number of treatments with lower doses the better (large doses over fewer days associated with more neuropsychological problems after a year or so).
      • instillation of a radioactive substance, p32, at high-doses, directly into discrete metastatic tumors is proving highly effective. Work largely done in this country by Stanley Order, M.D., near Stonybrook, NY (516 222-2727).
    3. Chemotherapy
      • little attention given to chronobiology (e.g., 5-FU when given close to 4 a.m. is more effective, Taxol given in the late afternoon may be more effective).
      • undisclosed (and unself-realized by oncologists themselves) conflict of interest by oncologists who are offering drug-company sponsored protocols, for which they are often being paid upwards of $3000 to $5000 for each patient they enroll (yes, they and their staff do spend a bit more time on research paperwork, but the compensation is far beyond that).
      • little real effort by most oncologists to find protocols elsewhere in the country for a patient – but most will help out if the patient makes the oncologist aware of the protocol(s) they are interested in.
      • little use of amifostine (Ethyol), which is also useful with radiation therapy. Proven useful in preventing side-effects from cis/carboplatin, but not so far with Taxol. Is likely to be found useful with numerous other types of chemotherapy. Given at higher doses for chemotherapy, usually about 910 mg/meters squared, requiring pre-hydration and pre-meds and with more side-effects. Some oncologists finding that giving lower doses (500mg or so) more swiftly (IV push) avoids need for pre-meds and avoids side-effects.
      • underutilization of colony stimulating factors such as g-csf or gm-csf (i.e, Neupogen, Leukine) to boost white blood cells, or hematopoetic agents such as erythropoetin (Epogen or Procrit) to boost red blood cells, or interleukin-11 (Neumega) to boost platelets. Patients struggling with low blood counts have often never heard of these drugs, but upon requesting them usually are given them. They’re expensive and managed care has, I think, led to stinginess in providing them.
      • underutilization and underdosing of the bisphosphonate pamidronate (Aredia). Presently indicated for bone metastases from breast cancer, and multiple myeloma, to prevent fractures and lessen pain, it has also been found useful with most every other type of tumor that metastasizes to the bone (lung, prostate in particular), when the bone lesion is lytic (eats at the bone). Patients often have to ask to receive pamidronate. The company that makes it has been testing it at higher doses (than the usual 60-90 mg every month) and finds it more effective at as high as 180 mg every two weeks – possibly having an anti-tumor effect in those dose ranges (but not significantly greater side-effects). A newer bisphosphonate, zolendronate, may replace pamidronate (but not soon).
      • hormone therapy underutilized or too quickly passed over, especially for breast cancer. Also, rarely given concurrently with chemotherapy in U.S. (but is in other countries, along with immunotherapy).
      • immunotherapy (also called biological therapy) largely held by oncologists to be of little value and to be experimental at best. Oncologists tend to know little about it, and have little real experience with it. The biotechnology industry is behind it in a big way, and these therapies are beginning to prove themselves. Biological therapy is emerging as a field separate from medical oncology.
      • maintenance and active prevention strategies to avoid recurrence is rarely pursued in oncology, except for hormone therapy for successfully treated localized breast cancer.
      • nutritional therapy and support during chemotherapy is weakly addressed; many patients become badly malnourished (see discussion below).
    4. Complementary and Alternative Medicine: the Commonweal community is unusually well-versed in this. For any patient who has come to me who has been to Commonweal, they are often using meditation, visualization, guided imagery, massage, and yoga; most every one has significantly improved their nutrition and is taking various supplements; many go to support-groups; many are receiving acupuncture and take Traditional Chinese Medicines. Michael Broffman’s clinic in San Anselmo [485-0484] is unique in offering a comprehensive TCM and supplement program, tailored to where one is in the course of cancer therapy.

      Overall, I consistently see that complementary therapies add enormously to well-being and improve people’s lives.

      • many oncologists, while not actually threatening to stop caring for a patient who wants to pursue an alternative or unorthodox therapy (as used to sometimes happen), will never the less make it clear that, if the patient wants to pursue that therapy, say, go to a clinic in Mexico or Germany, that they are on their own (which is still a form of abandonment).
      • I find that cranio-sacral osteopathy is not used as often as it might – that it can help greatly with pain and discomfort from cancer and its treatments (particularly with bone pain).
      • Homeopathy is also less often used, but helps some patients, particularly with symptom-control.
      • there are too many alternative and unorthodox therapies to present here. I still find Michael Lerner’s 1993 book Choices in Healing to be the best guide to think through how to evaluate a therapy.

        (Mind-body, psychological approaches discussed below)

  4. Nutritional and Physical Considerations

    • Malnourishment is an enormous problem when dealing with cancer (it is a catabolic, body-depleting disease). Loss of appetite, weight loss, protein loss — these problems are pervasive, and it is hard to recover when in such a state. Unfortunately, extreme anti-cancer diets are sometimes not indicated during cancer therapy, when more fat and protein are needed. Many patients benefit from nutritional supplements. Naturally occuring biological agents can be as powerful as any other cancer therapy. Keith Block, M.D. and his Block Medical center in Evanston, Illinois is one of the few places in the world offering tailored nutritional therapy in the context of comprehensive cancer care [1 847 492-3040]. He has well-trained physicians, dieticians, and other staff who see new patients and he supervises (and, whenever possible, he manages to meet personally with every patient). Many out-of-state patients go to his center to receive chemotherapy while also receiving individualized nutritional and supplemental therapies to mitigate the side-effects of chemo and potentially increase its effectiveness.
    • an easy measure of how well nourished you are is to see what your blood albumin level is. It has usually been measured as part of a catch-all metabolic or liver blood panel, but little attention is paid to the level of albumin. However, it consistently emerges as a major prognostic factor in survival (less than 3.5 is abnormal). If below 3.0, aggressive nutritional efforts need be undertaken to raise it. If severely low (below 2.5), intravenous albumin can be used to boost it back towards normal, and see if you can then maintain that level by your food intake; however, the general dogma in oncology is to not use IV albumin.
    • exercise is a forgotten modality in all too many cases; if you aren’t using your body, it will stop working. Even hospitalized patients need frequent use of muscles (leg isometrics) to avoid blood-clots (more common in cancer, called Trousseau’s Syndrome). Walking and yoga are excellent.
    • sleep studies: a largely unresearched area, but my observation is that sleep disorders are common in the context of having cancer and receiving cancer treatments.
    • sexual functioning: although all physicians are taught to take a sexual history and ask questions to determine if sexual dysfunction is present, few do so – and most patients are too embarrassed to bring it up.
    • emotional disassociation with those body parts affected by the cancer – it is important to realize that cancer cells are only a minute portion of your organ(s) and body and that they are continually being attacked and for the most held in check by your body’s (and organs’ and tissues’) own natural healing abilities. Try not to dissociate from any part of your body.

  5. Psychological, Spiritual, and Family Considerations

    • the psycho-oncology dose should have parity with the doses of chemotherapy and radiation therapy used; most patients have not adequately dosed themselves with psycho-oncological therapy (i.e, psychotherapy focussed on dealing with the problems surrounding having cancer). I highly recommend Lawrence LeShan’s 1987 book Cancer as a Turning Point to see if it really rings bells for a person, indicating more work in that area might be needed.
    • intentionality is vital – it is important that your doctor believes you can get well.
    • false hopelessness is epidemic. False hopelessness is most often due to how a patient has been informed by their oncologist as to their prognosis, or, if not having been given a prognosis, is treated with little hopefulness. They often have been given to believe that they are incurable. Many say to me that they are being treated like “a dead man walking.” However, in most oncologist’s practice will always be a group of patients who are surviving metastatic disease – and may be free of disease – years, sometimes decades, from when they were diagnosed. As for metastatic breast cancer, at the time it is diagnosed, many women are hit over the head with the oncologist’s pronouncement that it is incurable (buzzword: palliative therapy). Get a copy of the editorial in the August 1996 Journal of Clinical Oncology, by George Sledge, M.D., entitled “Should We Dream the Impossible Dream? The Meaning of Long-term Survival in Metastatic Breast Cancer,” in which he points out that there are consistently women who do survive metastatic breast cancer. The number may be low – about 3% – but that is based on studies by Gabriel Hortobagyi, at M.D. Anderson, largely using older forms of chemotherapy, during the 1970s; present therapies can be expected to push that survival percentage higher. Why shouldn’t a woman aim for and believe in her ability to be in that group of survivors?
    • neuropsychological testing: rarely performed in the context of cancer care, but can be an important baseline or means of evaluating whether cognitive and emotional changes are organic (i.e., due to radiation of brain) or functional (depression).
    • spiritual care is seldom prescribed or recommended by oncologists, patients must self-initiate it.
    • family crisis are common, and are often just accepted, rather than worked through – or, ideally, anticipated and prevented. This is where psycho-oncological care is essential. I finding that involving family (and friends) in helping the patient, by helping them find useful tasks (homework assignments, chasing down research, making calls, getting records, etc.) makes a real difference.
    • older patients often say taht they don’t want to waste any of the family resources (i.e, inheritances) on themselves.
    • adult children of older patients often won’t accept that their parent is dying, and that their death may be a natural one.

  6. Primary, preventative, and wellness care

    • the primary care physician is often out of the picture once metastatic cancer is diagnosed, and the medical oncologist becomes the de facto primary care physician. Medical oncologists, although they had to become trained in internal medicine before they could do a fellowship in oncology, generally have had little training in primary and preventive medicine. I urge patients to maintain or renew their relationship with their primary care physician.
    • Pap smears, mammograms, prostate checks, skin checkups; dental visits, bone density tests, hearing and vision testing, etc., all should continue (and patients are often delighted to be reminded to have such checkups – it validates that they are expected to survive).

  7. Quality of Life, Pain and Symptom Control, End-of-Life Planning

    • this continues to be under-addressed; patients equate needing pain medications with having advancing disease, and often are not using pain medications effectively (nor were taught to).
    • referral to a pain clinic can have wonderful consequences (selective injections to relieve pain, novel use of medications such as gabapentin/Neurontin, the new Cox-2 inhibitors, e.g., Vioxx). NSAIDS and Cox-2 inhibitors may be anti-metastatic drugs (along with anti-coagulants).
    • patients are often freaked-out when an oncologist brings up Living Wills and Advance Directives. It does need to be addressed, but it matters how and when. Ideally, the primary care physician should have addressed this before the diagnosis of cancer. The fighting spirit should not be diminished by having settled these issues – if anything it is freed up for the work at hand.

  8. Quality of Care to Date

    Athough the overall standard of care in American medicine is, in my opinion, getting lower rather than higher, there are, fortunately, not many instances where it is obvious that a patient needs to find a new oncologist. But it does come up, and it can be enormously therapeutic to fire your doctor.

  9. Communication with Health Care Providers

    • where many patients get in trouble is in not realizing how bound a physician is to his or her schedule, and how often they are behind. That is not the time to launch into a long series of questions. Better to schedule longer appointments, and try to get your questions to the physician beforehand (by fax is usually easiest, and try to limit your questions to no more than 5). If possible, offer to pay for extra time with your doctor.
    • when otherwise self-assured people become patients they often revert to almost childlike obedience and fear of doctors – in particular, worrying that if they become assertive or demanding that the doctor won’t take as good a care of them, or worse, may not want them as a patient (fear of abandonment).

  10. Advocacy Within the Health Care System

    • this is frequently needed, and most patients are not well-situated or emotionally well-equipped to undertake it (having a large dependence on the system makes them fearful of retributions and abandonment) – it is better handled by a family member or savvy friend.
    • Talk given 11/13/99, handout updated 12/11/99,
      by Mark Renneker, M.D.

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Note: the following information is attached to this handout to allow better analysis of my viewpoints and observations. It is not intended as a means of gaining more patients; the wait for new patient appointments with me is unfortunately long, about six-months. My hope would be that anyone thinking they might need my help would instead be able to use the information in this handout to navigate on their own; and for those health professionals considering doing this kind of work, reading over my background could help them in preparing for it. For anyone wanting further information on my practice, if you write, call,or fax my office, you can request to be sent a comprehensive, 17-page writeup on the kinds of cases I work with, and how to go about setting up an appointment to work with me. My address/phone/fax is: MARK RENNEKER, M.D. 4637 ULLOA STREET SAN FRANCISCO, CALIFORNIA 94116 phone (415) 681-5357 fax (415) 681-9734.

Personal Background

Undergraduate work in biology, education, and communication at the University of California, Santa Cruz (Gregory Bateson, mentor). Medical school at the University of California, San Francisco (graduated/M.D. in 1979). Post-graduate training in the School of Public Health, University of California, Berkeley (1979-80). Residency in family medicine at UC San Francisco, at San Francisco General Hospital (completed 1984). Diplomate of the American Board of Family Practice (i.e., board-certified), since 1984.

Faculty appointment at the University of California, San Francisco, School of Medicine, as an Assistant Clinical Professor in the Department of Family and Community Medicine. Attending physician at the Cancer Education and Prevention Center, Summit Hospital, Oakland, California (1984-92); Principal Investigator of a three-year (1989-92), $600,000 national American Cancer Society demonstration project that provided comprehensive cancer education and screening services to the poor, at West Oakland Health Center. Attending physician at the South of Market Health Center (an inner-city clinic; 1982-98). Attending physician at Laguna Honda Hospital (geriatrics, rehabilitation. hospice; since 1983). Attending physician at the San Francisco General Hospital Family Practice Residency Program (teaching clinical preventive medicine to medical students and residents). Founder, Patient-Directed Consultations (patient advocacy and research).

American Cancer Society volunteer (local, state, national; 1974-98), Member, Planetree Board of Directors (1993-98). Member, the American Association of Cancer Education (since 1986), Association of Teachers of Preventive Medicine (since 1978). Author of numerous medical and lay articles and books. Editorial Board, “The Journal of Cancer Education.” Editorial Board, “Physician and Sportsmedicine” (1992-99). Founder of the Surfer’s Medical Association (in 1986); Editor, “Surfing Medicine” (the Journal of the Surfer’s Medical Association).