Abstract

Keywords: Decision making, diagnosis, patient support groups, prostate cancer, multidisciplinary consultation.
Citation: Graedon J. Making treatment decisions in the midst of chaos. J Participat Med. 2015 May 21; 7:e6.
Published: May 21, 2015.
Competing Interests: The authors have declared that no competing interests exist.
 

Health care flourishes when the diagnosis is straightforward and the best treatment is clear. If you break a bone, an X-ray should reveal the problem. It can then be set if necessary and immobilized for healing.

When the diagnosis is murky and the best treatment is unclear, patients are frequently left to flounder amidst a sea of conflicting and confusing information. How do they make decisions in such challenging situations?

My Dilemma

When I was diagnosed with prostate cancer a year ago on the basis of an MRI, I experienced all the usual anxiety and uncertainty associated with hearing “you have cancer.” I was well aware of the debate regarding PSA screening and I knew that many cases of prostate cancer are indolent and don’t require aggressive treatment.

That was not my case. Although I had been under active surveillance for the previous two years, the diagnosis came as a shock and the biopsy results were not encouraging. The surgeon made it clear that the time for “watchful waiting” was over. His unequivocal recommendation: radical prostatectomy.

At first I did not question the treatment plan. Once the wheels were in motion and I was on the surgical schedule I started planning. I organized blood banking and discussed both anesthesia options and post-surgical pain management with a brilliant anesthesiologist. I wanted to minimize the cognitive effects of gas anesthetics and reduce the potential cancer-promoting impact of opioid analgesics.

Simultaneously with these plans I started actively participating in prostate cancer support groups (online and in person). Quickly I learned that many patients who had gone through radical prostatectomy were not satisfied with the outcome. In addition to incontinence and sexual dysfunction, they reported cancer recurrences. Many seemingly had had negative margins and lymph nodes when the prostate was removed and had been told that their prostate cancer treatment was successful. But when the cancer returned, they needed additional treatment, usually radiation and hormone suppression.

By now, I was a basket case. Some patients were encouraging additional sophisticated imaging techniques (although I had already had negative bone and CT scans). Some were advocating for implantation of radioactive seeds plus external beam radiation. Others promoted different forms of radiation, high intensity focused ultrasound (HIFU) or cryosurgery (freezing). I consulted an integrative oncologist, a prostate cancer specialist and two urological surgeons. It became clear that for prostate cancer there was no consensus as to the one best treatment.

All this information and confusion left me in a terrible quandary. Like so many patients with a serious condition (other cancers, Lyme disease, fibromyalgia, inflammatory bowel disease, and many others), I was pushed and pulled in so many different directions I felt a bit like Alice when she slipped through the looking glass.

Ultimately, I discovered that a multidisciplinary consultation was an option. It involved my surgeon, a medical oncologist, and a radiation oncologist. I learned that I was a candidate for a Phase 2 clinical trial involving a unique combination of hormone suppression drugs for 6 months instead of surgery. In the middle of this regimen I would receive a tailored dose of intensity-modulated radiation therapy (IMRT). After weighing the possibility that I might need both radiation and hormone suppression after surgery anyway, I opted for this clinical trial.

My patient support group has been incredibly helpful in sorting through the tangled web of options and what I could expect from each treatment approach. Many of these prostate cancer survivors have been in the trenches for years, so their collective experience is impressive and devoid of the turf battles that may take place between providers.

Lessons Learned

Despite years as a patient advocate, I was ready to go along with the first recommendation I received. A scary diagnosis can lead to panic, which interferes with clarity. It was only after I discussed a variety of options with a wide range of providers as well as informed patients that I was able to step back far enough to make a reasonably calm decision.

Even though the voices from patients and providers can be confusing or even unsettling, it is worth taking the time to explore the various therapeutic possibilities and their potential outcomes. Sometimes so-called experimental approaches might be right; in those cases, patients talking amongst themselves may be better informed than clinicians who follow standardized protocols.

When there is no one clear decision or treatment plan, patients need to find their own path and choose the approach that best suits their particular situation.

Copyright: © 2015 Joe Graedon. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.