The patient's daughter had not been at the initial consult and thus had only secondhand information from her father and mother.
Frank delaRama, RN, MSN, AOCNS
His daughter called me first.
She found me on our website, just doing a general search for prostate cancer resources in the area. Her father had just received the news that he had prostate cancer, and it sounded like late-stage disease. He was diagnosed by a local urologist, but not one from whom I routinely get referrals for prostate cancer navigation. On that first call, we spent at least half an hour addressing all of her questions and concerns, among them:
Why not surgery?Why not radiation?Why only hormones?Why so long to check another PSA?How long does he have?
The patient’s daughter had not been at the initial consult and thus had only secondhand information from her father and mother. She did know that her father’s Gleason score was 9, and his PSA was a little over 10. Given that her father was already in his late 70s, with other comorbidities including cardiac and renal disease, surgery was not a good option. In reviewing the NCCN guidelines, another option to consider would be radiation, with or without hormone treatment. His urologist had initiated the hormone treatment, but no radiation oncology consult was ordered yet.
With multiple questions and too many unknowns, I invited the family to come in to visit with me. In the meantime, I would reach out to the patient’s urologist and primary care provider to gather more information to support the family in making their treatment decisions.
The First Visit
Mr M, his wife, and daughter all came in to meet with me. Since that first call with his daughter, I was able to connect with his urologist and primary care provider to get a better sense of the situation. Without any symptoms, the plan was to reserve radiation until needed, which was reasonable given his clinical picture (T2a, Gleason 4+5, PSA 10.2), and no reported back pain.
At this point, Mr M was not having any problems with the regimen of bicalutamide and leuprolide acetate that had started about 1 month earlier; however, there was obviously still a lot of worry in the room. Mr M and his wife are clearly from an “old school” generation who obeyed doctor’s orders and didn’t want to disappoint the esteemed professionals providing his care.
Mr M’s daughter was a bit more inquisitive but was having difficulties with the role reversal of caring for someone who basically cared for her all her life. On top of all this, Mr M is a stoic man, not inclined to disclose many symptoms anyway—hoping to power through treatment on his own as a lone warrior—not wanting to burden his family.
Many more questions later, I gathered that Mr M and family were a bit more comfortable (although understandably not totally happy) with the plan at hand for an advanced prostate cancer—though not truly curable, definitely treatable for a long period of time. So they could hear it directly from the specialists, I offered visits with medical and radiation oncology. During these detailed consultations, I knew that there would be an even more thorough review of the pros and cons of treatments beyond the scope of my practice. Nevertheless, I reinforced with the patient and his family that they should reach out to me anytime, because as their nurse navigator, I could serve as their “inside man” and advocate within the system to get the answers and assistance they might need during this tough time.
The radiation oncologist met with the family and concurred with the urologist, aiming to reserve treatment until needed. Mr M and his family were grateful to meet him, so that when the time comes, they would already have a relationship with the specialist.
The medical oncologist also concurred with the urologist, reinforcing the plan for hormone therapy alone. She also was able to advise them on potential clinical trials for the near future. The family was grateful to meet her and have a connection for managing the myriad options down the line, ranging from hormones to chemotherapies to clinical trials. The medical oncologist also began to see them on a regular basis; having yet another physician monitoring gave the family even more reassurance.
Over the following weeks, I connected frequently with Mr M, his wife, or his daughter by phone and e-mail, answering questions about the tests and visits he was completing. Unfortunately, Mr M developed some nagging moderate back pain, matching with the lesions in the thoracic spine already identified by MRI and bone scan, so treatment planning is underway.
As of today, it is odd not to get frequent calls from Mr M and his family. He is getting plenty of great care, having multiple visits with both medical and radiation oncology, even exploring some clinical trials.
In working with a different urologist for a change, it was nice to know that our advice to the patient was on the same page, with little to no conflict overall. Even without meeting with the urologist in person myself, I was able to reinforce his teaching and advice through my interactions with Mr M and his family. Some physicians may not understand the role of the oncology nurse navigator (ONN), perceiving that it will take away from their practice; yet patients, families, and providers soon come to realize that the ONN is there to support them and collaborate in their care.
Sometimes I wonder what would have happened if Mr M’s daughter had not found me online. I would hope future patients and their caregivers will just expect to have a navigator when met with a cancer diagnosis. I left messages with Mr M and his daughter just to check. I haven’t heard back yet . . . could be a good thing. really. I hope they’re getting everything they need at this point.
Frank delaRama is a clinical nurse specialist, oncology/genomics, and a prostate cancer nurse navigator at the Palo Alto Medical Foundation (PAMF) in California.