Patients share how seeking expert opinions, exploring all available treatment options, and working with experienced specialists helped guide their prostate cancer care. They emphasize the importance of self-advocacy, involving loved ones in treatment decisions, choosing care that aligns with personal goals, and trusting a personalized treatment plan based on the latest evidence.
Henry Cornelius:
I knew that with this very aggressive and I think somewhat rare as the pathology later confirmed with the lymph node involvement but no bony or visceral metastases that I needed to get to a center of excellence. I knew Dana-Farber was an option, Memorial Sloan Kettering, Fred Hutchinson out in Seattle, MD Anderson. That was a self-directed thing and that is one piece of advice that I would encourage everybody to really focus in, on self-advocacy, and so I self-referred to MD Anderson and to Dana-Farber.
My team at UAB, who I love, they're at the center of everything, they didn't send me out there. How I ended up there was research. My mom had had multiple myeloma and ultimately died after surviving for 10 or 12 years and she also went to a center of excellence, and so that informed my decision-making process.
Interestingly, I had appointments at both places. They were set coincidentally on September 28th, the same day. I sent my pathology report to both, and the next day, MD Anderson had me moved up to September 9th. I was telling somebody, when you get a pathology, this is from my biopsy, that challenging, you go to the front of the line, I suppose. That's how I ended up at MD Anderson first.
I remember my wife and I, when we met with our surgeon, he said, "What is your goal?" These are my words. I'm paraphrasing. "What's your goal? What do you want to do?" We knew what the risks were, because even in the robotic-assisted procedure, with the sensitivity of the nerves, you might not get your function back. I remember my wife looked at the surgeon and said, "I want him here to be with me and our 11-year-old daughter for as long as he can be."
As guys, as they navigate this journey, you have to really ask yourself how important that is to you and what your ultimate goals are, because you might not get that part back. Regarding barriers to treatment, I was fortunate because I was self-advocating. I chose not to accept just being treated at a regular hospital.
Joe LaBella:
Dr. Barata sat me down, told me what the options were, and without being too blunt, immediately said one of the options is castration. I said, "That's not on the table. We're not doing that. The boys in the basement came with the package, they leaving with the package." He said, "Well, we have other options." Actually, the drug that he put me on was not, I guess the FDA or whoever says it's okay to use this, wasn't ready to be used yet, so it took a while, about two more weeks before he started me on that, and they had already injected me with a shot in the stomach.
John Gritzmacher:
I like to be open about things, so right away, I wanted to make sure my children, my two daughters and my son, knew about my diagnosis. I have a large family. I have seven sisters and two brothers. I made appointments to see a surgeon. I sat down with him for a while and found out what he thought the best options were, and then I met with a radiologist and I talked with her about my different options. One of the options, which I was kind of surprised, was do nothing. I'm so glad I didn't do that because I felt I needed to do something about the cancer, so I chose radiation.
I was eligible for a clinical trial where it would go six sessions. At first, I thought, "Well, whatever. If I get taken for the clinical trial, it'd be good. If not, that's okay." But when I found out that I wasn't accepted for that, that I would do the standard procedure, I was disappointed, because it was 28 sessions, five days a week from October 6th through the last day of November of 2020. That was a difficult time.
My father died towards the end of my treatments, so I was dealing with that and dealing with the radiation. The radiation was much less invasive, even though it took about the same amount of time. I talked to my doctor about... Just recently, I just saw for a physical a couple weeks ago, and I said, "Did I make the right choice in radiation and should have I had the surgery?" We talked about it a little bit and he said, "You made the right choice."
We kind of came to that consensus, because I was afraid that if I had done surgery, would have my results been different now? I was kind of glad now that I didn't have the clinical trial of only six sessions of radiation, because I really would have had a big question mark of did I do the right thing in that. By having the standard 28, even though that was a lot and it was a rough month and a half, that I'm kind of glad that I went through that because I know I would have had questions about did I do the right thing.
John Wean:
Dr. Kilari has been very good in terms of guiding me through this. He emphasized the importance of intensifying treatment early on. I think it was maybe the chartered study. He had mentioned that the evidence was so compelling that it wouldn't be foolish to not do enhanced therapy. My son from San Francisco was very much on top of technology and wants the state of the art.
He wanted me to get a consultation at Mayo, which I did with Eugene Kwan, who's an amazing guy. It was just a lot of fun going up to Rochester. My son flew in from San Francisco with his significant other, which I thought was very sweet of. He bought me dinner and everything. Very nice. Dr. Kwan basically confirmed the treatment trajectory that Dr. Kilari was recommending and, again, reiterated the importance of intensification of treatment early on.
I also saw Colleen Lawton when... Early on, Dr. Kilari wanted me to see her just to see what our options were with respect to radiation. She was very thorough in terms of saying what my options were, and part of that was because I was having intensification of treatment already.
The hormone therapy wiped me up and then the Taxotere was kind of added to that. I was looking more forward to Zytiga, and so I thought, "Boy, I'm going to be a mess if I'm getting radiation in all these three." I figured I'd be unable to crawl out of bed, so I just thought I was too sick to try, because it was controversial whether that would extend life also. I wanted to be a good guinea pig, but I said, "I'm just beat-up by this treatment."