Patients share how seeking second opinions, researching treatment options, and working with experienced specialists helped them make informed decisions about their prostate cancer care. They emphasize the importance of understanding all available treatments, preparing for potential side effects, advocating for yourself, and choosing a personalized approach that aligns with your goals and quality of life.

Scott Evenson:

Initially it was just a doctor set up from my orthopedic surgeon. From there he had said that I could basically pick from the available oncologists at my hospital. And from there, to be honest, I chose a doctor who was a head of the clinical trials. So I went to Facebook and I looked up prostate cancer and I found a couple groups and that was actually pretty beneficial.

Everybody's body's different and we don't know what's going to work or at least I didn't realize that everything doesn't work the same. When you have a problem with your car, you take it in. The mechanic says, "Hey, it's this," and you fix this. With prostate cancer, unfortunately my doctor laid out about eight items and basically said, "Choose." Through that whole process I learned of what they call the standard of care when someone's stage four at newly diagnosis. I for myself decided that's what I wanted to do and that was also what my doctor was originally leaning toward, but he didn't want to leave anything else out on the table that I could choose. So I had did that.

Peter Koskovich:

I want to say I was doing Lupron and that was pretty much the only injection I was doing at the time was Lupron. And so that was a wake up call to me because my pituitary gland was shut down, my PSA was ... Our testosterone was shut down and I noticed the effects of that. And I said, "There's got to be more to this. You just can't shut me down and call that quality of life." So I started doing research and started looking around, was calling hospitals through my work, getting second opinions through some of our programs and took advantage of that.

At that point, my spouse at the time, she had made a recommendation that I can go anywhere I want. It's up to me. And so I started calling Cleveland Cancer Clinic, Sloan Kettering, the Seattle Cancer Clinic and Denver Cancer Clinics. And I just started looking around and getting opinions. And then I ended up, since I'm from Milwaukee, I ended up calling Froedtert. My mom at the time had cancer. So they had a lot of good things to say about how Froedtert was treating her. So I said, "I'll try it." And I found Dr. Kilari. He was a huge instrumental component.

To me, it was a breath of fresh air, a 180 from what I was getting in Oklahoma. Not to say Oklahoma was a bad place to get treatment, it's just that my doctor was very self-contained. He was not very verbose in what my options were. And so when I got to Dr. Kilari from having almost zero options and being told to get my affairs in order, he said, "You have a myriad of options. You have at least eight and that would just be a stage by stage. If this doesn't work, we'll do this. If this doesn't work, we'll do this." So it was very hopeful and it was very encouraging.

So I went down that path of looking at all the options that were out in front of me, including clinical trials. And being of a technical mindset, I said, "There has to be more than one way to attack this." I was already had changed my diet from being a good clean diet to even being a very, very clean diet. So I went through, I was doing a holistic approach, if you will, where I was working with my doctors and the clinical staff and doing the treatments, which still consisted of Lupron, but I was trying to avoid chemo at all costs because I really felt chemo was not where I wanted to be at. I just didn't feel that was going to be the answer for me.

So I continued with the clinical trial and that was a good thing. At the same time, I responded very well to Lupron. I did not understand what it was physically doing to me though. And so I researched more of that and with the help of Dr. Kilari, he continued to suggest other antigens that could be used outside of Lupron. I also then looked at what other treatments. Again, I was researching on my own to some extent, but trusting Dr. Kilari to quarterback what my treatments would look like. So I did that and in the process I became vegan went away from meat 100%. So about five years I went away from meat totally, everything just pure vegan. I then also had moved from Oklahoma to Florida and found another oncologist, Dr. Cesaredi.

Kelvin Slaton:

I had a one o'clock appointment because he had called me about 10 o'clock, I had a one o'clock appointment with him that seemed urgent that he wanted to talk about it. He did another digital exam and then we talked some more, he gave me a book to read about it and he also encouraged me to get a second opinion if I didn't like anything he was saying. And not that I didn't like anything he was saying, it's just that I've always believed in second opinions about everything, rather if it be a health issue or a job that had to be done around the house or something, you'd always get more than one estimate.

I did do another opinion. After finding about Dr. Thomas and looking up some of his background information on him, we decided we'd call him and get an appointment. He did do a digital exam at that time and he told me I probably had any place between 30 and 60 days to make up my mind because he could feel it bulging on the prostate and he offered all the solutions, but he encouraged the prostatectomy at my age and that's what we elected, the prostatectomy. Now after talking with other friends of mine that I found out I had a prostatectomy, I don't blame Dr. Thomas in any form or fashion. I felt that the clinical area failed me in that because I don't believe I was totally prepared for what to expect.

The other friends of mine, they would deal about 30 days out from when you decide to have your surgery and during that time they probably went back and forth to the doctor, not to see the doctor, but to see the nurse and the nurse would fill them in on all what they had to do with however you want to pronounce it, the kegels or kegels and how important they were. That was never stress to me and I don't know if it really made a difference or not.

Jonathon Hall:

He gave me the possible outcome scenarios. Said, "This is what you need to read up on." And there were four options given to me, which I remember there was radiotherapy, chemotherapy, there was brachial buds to put inside you and there was the operation with the da Vinci machine. So those were the four things. And I was really sent away to go and investigate which I thought would be the best for me.

I'm quite lucky that I've got a very good sort of network of friends both in London and on the South Coast and I inquired with people who I know who are in the medical profession. I did some research online. I was very much about getting the absolute perfection in terms of clinical outcomes of professionalism and input and advice and so on. And the McMillan nurses were very good in this instance as well. And I was given all the information, which I read up on, read up on with my wife. And the radio and chemo were an obvious solution, but it was deemed to be not a good one because it didn't quite get it right the first time around, then we had to go into an operation because of the way the chemo radio works, the degradation of my cell structures would take longer to do that.

The brachial buds were a complete no starter because my girls at that point were nine years old, twin daughters, nine year old twin daughters and to be effectively radioactive for quite a period of time, which they wouldn't therefore allowed to go near me was just not an option at all.