First Consult with Urologist Tomorrow

As others have mentioned, for now you're simply gathering information. My PSA was rising, not so far or fast as yours, but an MRI and digital exam didn't reveal anything. A biopsy confirmed cancer and then a PSMA PET scan gave the specifics. For treatment, I highly recommend a genitourinary oncologist rather than a generalist. I went to a group of generalists, and while they have taken action that has stopped the cancer, my quality of life has been affected significantly. Remember that it's your life, not theirs, so if cancer is diagnosed weigh your options for longevity vs. quality of life and talk sincerely about side effects of treatments. All the best for your journey!

my advice would be to start now seeking out a Center of Excellence for a future consult. They tend to have the latest technology, research, training and outstanding doctors. Since most of these centers offer just about every type of treatment, should you need one, they will recommend that treatment which is best for your situation. Many smaller practices may only offer one type of treatment and will therefore recommend it. While it might work, it may not work as well as some other type. I am a Gleason 6 on Active Surveillance and my original urologist (who only removes prostates) did recommend I go on Active Surveillance. But after reading all of the comments on this forum I realized that some day I may need treatment and wanted to already be at one of these centers of excellence should that time come. I am now at the Mayo Clinic. They are extremely organized. Various teams contact me for appointments, MRI's, biopsy, etc. PSA blood test results come back within 2 hours of the draw. You can always stay with your own doctor, but prostate cancer is not particularly cut and dried so having several doctors review your case is probably worth the time and effort. As others have mentioned, in today's world you do need to be your own advocate and do research. I will say a prayer all goes well for you and that your case may be nothing more than prostatitis which at one point made my PSA jump from 2 to 8. After a round of antibiotics, it returned to the 2.

If it were me, I would:
> request a confirmation PSA test. (If they can do a PSE test, it’s more sensitive and accurate than a standard PSA test.)
> request tests to rule out UTI, prostatitis, or anything else that might have caused a PSA spike. (& consider other things that you might have done in the days leading up to the PSA test - like sex, heavy weightlifting, or a long bicycle ride - anything that might have put pressure on or aggravated your prostate).
> I would also request a “Free PSA” test. The ratio of Free PSA to total PSA (called the % Free PSA) is a helpful indicator.
> Schedule MRI.

You’re in the data-gathering mode. Collect all the information you can.

@benz57
I agree with @jayhall Ask for the PSE test. It is a blood test developed by Oxford Biodynamics, which will tell you, based on five bio markers with 94% accuracy, as opposed to just a PSA test which has 55% accuracy, whether you are likely or unlikely to have prostate cancer. If the urologist wants to do a biopsy, request an MRI guided fusion biopsy, if available.

After your appointment, come back to this web site and share.

@bobgolf Yes. I've found that the level of rigor and professionalism found at a center of excellence is light years beyond what I was experiencing at a urology clinic chain that "did" cancer treatment for people who needed it. But, going in, it's hard to know that. Only by chance did I get referred to the right place due to a technical malfunction with a radiation machine at the original place. They were ready to radiate though they had only a small fraction of the evidence now being compiled at the center of excellence. Get the second opinion from a place where cancer is their only business, where they teach and practice the latest.

@benz57 - You're more than welcome. How did your appointment go?

totally agree. At the Mayo Clinic, PSA test results come back in less than two hours. You get scheduled for the draw and then your consultation regarding the results on the same day just an hour or two apart. MRI and biopsy scheduling are handled by "teams" that are extremely organized. It is very impressive.

I agree with everyone who has advised you to go to a center of excellence. The National Cancer Institute (NCI) lists the locations of the ones they certify at this webpage: https://www.cancer.gov/research/infrastructure/cancer-centers/find

I lived about an hour and a half away from the NCI designated facility in my region. I was initially hesitant about going there. For one thing, I wondered if Medicare would pay for the highest level of care available that I expected would be available there. There is no problem on that account. It seems you can go anywhere in the US to any place that will accept you as a patient and Medicare pays.

It was initially harder to get an appointment as soon as I wanted, compared to the local clinic. My local primary care sent me to a local urologist after she saw my PSA go above 5 when it had been half that a year previously. The local guy did a digital rectal exam (DRE) and recommended a biopsy. I knew that there was controversy about whether men my age (76) should even get PSA tests and in my denial that I could possibly have a serious condition I did nothing for several months.

I went to another local guy. He ordered an MRI. By then, I had studied up a bit. Studies of how accurate MRIs actually are indicate that there can be a wide variation in interpretation of the result, so I insisted that the MRI be done at the NCI designated institution even though I was still seeing the local urologist. The MRI indicated a large mass of "clinically significant cancer" . I decided I would accept a biopsy.

At that point, I decided to transfer my care to the NCI designated center. The urologists there had no appointments available for several months. I booked one. But I also put myself on a waiting list with the local guy. The thing is, it seems that although many talk about MRI results as if they were certain about what is indicated, there is enough doubt that things still grind along what can seem very slowly to a guy (me) who suspects he now has cancer. The NCI center biopsy appointment I was given was two months away.

An appointment within a few weeks came up with the local guy. I took it. He did a perineal biopsy. He ordinarily performs rectal biopsies, but he went along with my request. Now I had biopsy confirmed data about my case: cT3b, i.e. "at least high risk". I contacted the NCI center again, saying I had a biopsy now, when can they see me? They gave me an appointment in one week. Biopsy data is taken more seriously than MRI, even though there are also uncertainties about the interpretation. (Eg: the first thing the NCI center guy did was order a reinterpretation of the biopsy by their own pathologist).

After that, I have been getting timely appointments and care from the NCI center.

I don't care that I have to go to the big city. I lived an hour and half away when I first started all this, and now I live 3 hours plus away. To get the radiation therapy they eventually prescribed I had to find living accommodations for 4 weeks in the city.

I don't regret anything, except for my initial reluctance to take my initial PSA test seriously. I'm grateful that the center I go to exists.

Good luck.

I'm being treated at the Geisinger Healthplex in Pittston Pa. I was given a DRE at my appointment this past Friday, and it was negative although he did mention my prostate is very large. He was going to give me a psa with a free psa, except had to put this off because of the DRE which can skew the results. So I'm going back this week for the repeat psa. I am also scheduled for an MRI on June 16th. All of my treatment at Geisinger is being paid for by the VA so I may not be able to go anywhere else, that is, this is the community care I chose. Also, having to get places by bus, this is very convenient (only 30 minutes away). The Healthplex facility generally seems pretty impressive to me, although I haven't done much here yet.

If your dre and mri were negative, how did you know to go ahead with a biopsy?