Prostate Health Index (PHI) results: Time for a second opinion?

Posted by lizziew @lizziew, Apr 15 2:15pm

My husband recently had his first PSA test. It came back at 16.01. He was referred to an NP in urology. She did a DRE, which confirmed an enlarged prostate. She ordered additional PSA testing. The next day, his PHI showed 89.2, PSA total was down to 10.56, PSA free was 1.56, and %Free PSA was 14.8, p2PSA is 42.8

The NP sent a message in my chart stating that there is a 50 possibility of prostate cancer. He has an appointment for an MRI end of June. We are unavailable between May 27 and June 17, and no earlier MRI appointment is available. The NP made a video visit appointment for end of August to discuss MRI results and next steps.
After reading about the PHI tests, and my husband’s results, it seems like there is a greater likelihood of prostate cancer than 50%. My husband has CLL, and has had several secondary cancers. Numerous squamous cell carcinomas, and a malignant gist in his duodenum. Would it be prudent to get a second opinion with a urologist? We were not given the option of seeing a urologist at his first appointment. We know that prostate cancer is slow growing, but still want to speak with a urologist before end of June. Any recommendations?

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@lizziew

Thank you so much!

Does the oncologist need to be a urologic oncologist? Is that the doctor I should be researching?

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You need to first get the results from the MRI, and a biopsy if the MRI sees tumors. If it does see tumors, and with the high PSA a PSMA pet scan would also be a good idea. Whether it shows cancer spread or not, you need to speak to a Radiation oncologist, as well as a urologist who does surgery. You want to make sure that the urologist/surgeon has many years of practice doing prostatectomies.

If the cancer has spread Outside the prostate you need to find a Genito Urinary Oncologist, They specialize in prostate cancer. A medical oncologist treats, all different types of cancer.

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@lizziew

Thank you so much!

Does the oncologist need to be a urologic oncologist? Is that the doctor I should be researching?

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The oncologist does not need to be specifically a urologic oncologist. I have both a medical and radiological oncologist, with the medical oncologist currently directing my treatment. A urologic oncologist may be preferable but I feel that the oncologist’s interest in and attitude toward the patient and ability to communicate (both speak and listen) is more important. A good oncologist will readily consult with other specialists as needed. Also, I would insist on being sen my the physician at each visit, not a NP or PA. Some systems really push the NP in lieu of a physician. Not acceptable when addressing this disease.

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@gbrickler

The oncologist does not need to be specifically a urologic oncologist. I have both a medical and radiological oncologist, with the medical oncologist currently directing my treatment. A urologic oncologist may be preferable but I feel that the oncologist’s interest in and attitude toward the patient and ability to communicate (both speak and listen) is more important. A good oncologist will readily consult with other specialists as needed. Also, I would insist on being sen my the physician at each visit, not a NP or PA. Some systems really push the NP in lieu of a physician. Not acceptable when addressing this disease.

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Thank you again. My husband has a fantastic oncologist that he sees at Duke for his CLL. If we need an oncologist for this, if it turns out to be PCa, she would be someone we really have trust in, and are comfortable with.
We definitely will get a second opinion, and it will be with a urologist, not an NP.
We went to Triangle Urology Associates because we felt that Duke NP didn’t take hubby’s issue seriously. When his PSA came back at 16, and then PHI came back at 89.2, they should have immediately referred him to a urologist. Instead, the NP said, you have a 50% chance of having PCa. Schedule an MRI, then she would touch base via zoom six weeks after the MRI.
Definitely felt like she wasn’t taking hubby’s issue seriously.

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@lizziew

Thank you again. My husband has a fantastic oncologist that he sees at Duke for his CLL. If we need an oncologist for this, if it turns out to be PCa, she would be someone we really have trust in, and are comfortable with.
We definitely will get a second opinion, and it will be with a urologist, not an NP.
We went to Triangle Urology Associates because we felt that Duke NP didn’t take hubby’s issue seriously. When his PSA came back at 16, and then PHI came back at 89.2, they should have immediately referred him to a urologist. Instead, the NP said, you have a 50% chance of having PCa. Schedule an MRI, then she would touch base via zoom six weeks after the MRI.
Definitely felt like she wasn’t taking hubby’s issue seriously.

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Looks like you are on a good plan. I had a similar experience that unfortunately allowed my PC to progress to metastatic. Without going into details, U of California Davis medical also did not take my condition seriously: “the urologists are pretty booked up, etc.”. I went to a second out of California health care system, was diagnosed and on treatment in two week. There is a lesson there. Actually several.

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@gbrickler

Looks like you are on a good plan. I had a similar experience that unfortunately allowed my PC to progress to metastatic. Without going into details, U of California Davis medical also did not take my condition seriously: “the urologists are pretty booked up, etc.”. I went to a second out of California health care system, was diagnosed and on treatment in two week. There is a lesson there. Actually several.

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It’s ridiculous that people have to advocate for themselves when doctors don’t take us seriously.
It makes me so angry that years ago, my husband asked to have his PSA checked, and was brushed off. Said at his age, they don’t really do them. Even a few months ago, my hubby went to his primary care physician and asked to have his PSA checked. She was hesitant at first, but when my hubby said he was having urinary issues, and his brother had had TURP twice, she said ok. Put the order in. Lo and behold, his PSA came back at 16. He was referred to Urology, but they only gave him an appointment with an NP. Not to denigrate NP’s, we have had great experiences with them, but when there is even a slight chance of cancer, a urologist should have been hubby’s first line. Especially given his CLL, and other secondary cancers. We are trying to be optimistic, but the MRI and other tests seem to point to PCa. If it is indeed cancer, I want the blasé doctor and NP to know. What if hubby had not insisted on the PSA test? Maybe, he would be suffering with metastatic disease. I hope not, but I’m scared it might be.
I’m so sorry you didn’t get the appropriate care when it would have made a difference between early cure and metastasis.
It just goes to show that even top rated health facilities can blow it.

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