Steve Jobs, the former mastermind of Apple, didn’t exactly behave brilliantly when he was given a diagnosis of pancreatic cancer: he denied the condition pure and simple. Therapeutically speaking there was a lot that could have been done, his illness was a case of neuroendocrine tumor, for which there is at this time a number of therapeutic strategies for dealing with it. Instead of starting the treatment without further ado, Jobs decided to take a holistic and macrobiotic approach – and lost valuable months, during which oncologists could have been able to achieve a great deal.
Patients in state of shock
Things began for the Apple guru not that badly: Jobs’ cancer was discovered more or less accidently, but still in its early stages. As the CEO of Apple was being examined because of kidney stones, medical staff found indicators of a neuroendocrine tumor. Their good news: “This is one of those slow-growing pancreatic cancers that can actually be cured.” Jobs nevertheless decided against surgery and chemo. Instead, he tried to treat the disease with diet, turned to spiritual healers and tested macrobiotic approaches. Nine months later, the tumor had spread considerably. “How could such a clever man then be merely so stupid”, many journalists are now asking.
But the refusal of truth didn’t end there: For months, the Apple-Star stated in several interviews that he had been healed – and gave other patients apparent hope. The people believed it – wanted to believe it, until Jobs’ condition was no longer able to go by unnoticed. A charismatic marketing star on the one hand, unable to speak publicly about his illness on the other: such was the conclusion of the press. Then there was no turning back: A liver transplant – necessary due to numerous metastases – was considered the last chance. Steve Jobs stood at the top of the waiting list at Methodist University Hospital in Memphis, such was the extent of his disease. In the medium term his surgeons were successful, yet he died on 5 October 2011.
The soul suffers, and the therapy suffers alongside in sympathy
Steve Jobs story, in general terms, is not an unusual one: after cancer diagnoses have been given, medical staff report existentiality-based fears – patients lose the ground under their feet, feel fear, helplessness, despair and rage. Others in turn suppress acknowledgement of their illness completely. The doctors have surely been wrong, data samples or data were switched: common lies pulled out as self-defending cover. And some flee into the hands of supposed healers with promises of alternative therapy. The social environment also often reacts completely wrongly: “Self-blame” is the dominant tone of terse declarations about patients with lung cancer (“That comes from smoking too much”) or liver cancer (“Should’ve drunk less”). Those affected benefit precious little from this, they sink ever further into a black hole.
Professionals in discussions
Psycho-oncologists can accomplish a lot here; they deal with the psychological and social consequences of cancer. “Important, frequently recurring themes are the delivering of bad news in all phases of cancer, the anxiety of patients over certain forms of therapy or dealing with dying and death,” Associate Professor Dr. Monika Keller from the University of Heidelberg states with knowledge of the system. This can be specially trained, for example, within the German project “Support and Optimisation of the Doctor-Patient Relationship through Structured Education and Training of Communicative Competence of Doctors Working in Oncology” (KoMPASS).
And the demand is likely to be there: at least one in three cancer patients would need this type of support. Trained therapists can satisfactorily explain, for example, diagnosis and therapy, provide assistance in making decisions and enable access to individual resources and, of course, increase the psychological resilience of those affected. Good outcomes are also shown by well-established methods such as progressive muscle relaxation according to Jacobson method or techniques of autogenous training. Prickly issues also – “How do I explain my illness to the children?”, “What is the deal with sexuality in a relationship ?” – come into the picture. The problem remains only and solely in financing: not all insurance carriers reimburse such benefits. Yet this is definitely possible with diagnoses such as “reactive depression” or “severe adjustment disorder”.
Treatment adherence becomes a relegated matter
Even when cancer patients accept the disease – and thus the therapy, then the next problem arrives. Many take their medication irregularly or incorrectly, though each tablet is a reminder of the tumor in their own bodies. Adverse effects can also cause a decline with those adhering to therapy. “In studies we only look at degree 3/4 side-effects,” says oncologist Dr. Manfred Welslau from Aschaffenburg – reason enough for immediate withdrawal of chemotherapy (grade 3) or for inpatient admission (grade 4). “But specifically for on-going therapy, first and second degree side-effects also play a decisive effect.” This can quickly lead to the infamous “medical vacation”. There is also a lack of short-term successful outcomes for pharmacotherapy, like those known for patients with antibiotics and analgaesics. For this reason such patients often seek alternative medical advice without first informing the treating oncologist. Better communication on the benefits and adverse effects of pharmacotherapy can help, but needs to be dosed carefully: at the first interview patients already switch off after a quarter of an hour, more than that simply contributes nothing. Experts advise follow-up appointments, including with specially trained nurses – here it seems that for many victims the reluctance to ask questions is considerably lower. That increases adherence to therapy, and patients more rarely grasp at straws offered by complementary or alternative medicine.
Mainstream medicine: no alternatives
While complementary medicine sees itself as a complement to established therapies, alternative medical procedures often go down their own paths. The evidence base for complementary medicine is not great either: studies on acupuncture so oft used against nausea, vomiting and tumor pain does not convince everybody. And while standardised mistletoe compound does indeed seem to show benefit against fatigue or pain, even here a Cochrane meta-analysis found partial methodological weaknesses. The interrelation with micronutrients is also discussed controversially in this context: Antioxidants for instance have, according to studies, no effect on the destruction of the tumor or even diminish the effect of chemo- and radiotherapy. There lies a problem behind this: Unlike with drugs, regulatory agencies do not investigate dietary supplements for their effects, even on tumors. “The importance of such products in cancer prevention or cancer treatment is clearly defined – nutrition supplements do not play a role here at all”, says the cancer information service.
For Steve Jobs, however, this realisation comes too late.