Steve Sakakini has some advice to patients newly diagnosed with prostate cancer. “Get a good doctor. A doctor who knows what kind of prostate cancer you have.”
In the past year, Steve has gotten cutting-edge combination treatment for metastatic prostate cancer. Things are going so well that his doctor may recommend that he can try going off his medications. But the picture was not always so rosy. He’s had to empower himself with knowledge and be his own advocate more than once along his prostate cancer journey.
For Steve, a retired aerospace engineer, it all started 11 years ago with a diagnosis of Gleason 6 prostate cancer. “I didn’t even think of prostate cancer, to be honest.” His diagnosing doctor said he’d have to have his prostate removed, but Steve sought a second opinion. Not so, said this urologist: in fact, Steve was a good candidate for active surveillance, or monitoring the cancer and treating only if there were signs of progression. Steve’s doctor followed him with regular PSA tests and MRIs. In 2016, an MRI showed that he had additional spots of cancer on both sides of his prostate, and he had another biopsy. In January of 2020, an MRI showed more cancer, although it hadn’t yet spread outside the prostate.
A missed opportunity
Normally, this would have been a trigger to get another biopsy and likely pursue definitive treatment. But the pandemic intervened, and no one followed up with Steve to discuss the results of the MRI. Fast forward to January 2022, and his PSA had continued to rise – to 160. His primary doctor ordered an MRI. The cancer had spread outside the prostate to surrounding bones, but not to nearby organs.
To get more information about the extent and location of the cancer, his doctor ordered a PET scan. Since late 2020, PSMA PET imaging been available for patients like Steve. These highly-sensitive scans can detect prostate cancer metastases earlier than with conventional imaging, when they are much smaller, which may inform treatment planning.
Offering hope through new treatments
In the meantime, Steve was looking for additional guidance. He got connected with PCF President and CEO Dr. Charles J. Ryan, “one of the most pleasant doctors I’ve ever associated with.” During their first phone call, Dr. Ryan went over Steve’s history in detail and offered his perspective. As Steve relates, “Dr. Ryan thought my cancer would respond rapidly to treatment, and told me about a new treatment program that was becoming more available.”
Steve needed a local doctor in California. He was referred to PCF-funded investigator and medical oncologist Dr. Matthew Rettig at UCLA. They reviewed the results of Steve’s PSMA PET scan and other tests and discussed the various treatment options that had the potential to extend Steve’s life. They decided on a three-drug regimen: darolutamide (a type of novel hormone therapy) + standard hormone therapy (with relugolix) + docetaxel chemotherapy. Such “intensified” treatment with two, or even three, medications has become the standard of care for metastatic hormone-sensitive prostate cancer based on clinical trials.
Good news and future plans
When he started treatment, Steve’s PSA was 330. Within weeks, it had dropped to 18: his cancer was responding. In August of 2022, after six sessions of chemotherapy, it had dropped to zero. Dr. Rettig waited 3 months to assess the impact and ordered another PSMA PET scan.
When they reviewed the results together, doctor and patient were very pleased. “The results from PSMA PET were really good,” Steve reported. “My prostate had no signs of cancer and had gone back to normal size. I had just two little spots of cancer in my bones.” If his next PSMA PET scan looks as good, he may be able to go off therapy entirely for some period of time.
Dr. Rettig was upfront about the potential side effects. Steve notes that he experienced hot flashes due to the hormone therapy, but they were tolerable. He also says he was one of the lucky ones, and had relatively few side effects from chemotherapy, although it wasn’t pleasant. “My mouth felt like I was chewing on aluminum foil” and he didn’t want to eat. In general, he hasn’t been limited in his activities, and he’s recently been able to travel to visit family.
Speaking of family… we now know that some prostate cancer can be linked to mutations (changes) in specific genes. In fact, prostate cancer is one of the most heritable of all cancers. Given Steve’s diagnosis of metastatic prostate cancer, Dr. Rettig recommended that he consider genetic testing for an inherited mutation. Steve’s attitude was that “it seemed like the right thing to do….to see if I had passed anything along to my daughters.” Fortunately, the results of the testing showed nothing concerning.
Diet and exercise complement care
Regarding side effects, Steve notes that dietary changes and supplements helped him during chemotherapy, reducing the nausea and bad taste in his mouth. For the last 10 years, he has taken supplements such as turmeric and vitamin D on the advice of a homeopathic practitioner, who has also counseled him about the importance of diet and “getting as much color in your meals as you can.” Cooked tomatoes, berries, kale and other cruciferous veggies, and red and orange peppers are on the menu. As Steve says, “We’re just beginning to understand the role of diet.” He’s also trying to get more exercise, both cardio and strength training.
Approaching treatment like an engineer
Perhaps the downside of being an engineer, Steve says, is that you can “overanalyze what’s wrong with you.” Based on his initial internet searches, “there wasn’t a positive word out there about the kind of prostate cancer I had.” But that skepticism and drive to research his condition ultimately led Steve to what may prove to be life-extending care.
Dr. Ryan underscores the importance of educating physicians, too, about new, practice-changing developments. “We see in multiple studies using large data sets that between 45% to 80% of men with Steve’s type of cancer do not receive treatment intensification beyond hormone therapy alone. That’s why one of PCF’s strategic goals is to identify and close gaps in prostate cancer treatment implementation.”