My name is Bill Licea-Kane. I live in Arlington, Massachusetts, which is right outside of Boston, Cambridge and Somerville, Massachusetts. My PSA test came back concerning the day the pandemic was declared. So it took until later in the year before I had an MRI and then even still later, before I had a biopsy. In the meantime, they were treating me for what I probably had, which was BPH, benign prostate hyperplasia. The drugs worked at first and then started to taper off, and then so we changed to another drug that worked and started to taper off. And then, once I got diagnosed, we moved pretty quickly into joining a clinical trial.

I knew about PSA. My primary care physician was wonderful about talking about the pros and cons of PSA testing. So we didn't do it every year. We were doing it every other year because I had known risk factors as far as we knew. Turned out I found out afterwards that... I knew my mother had breast cancer, but I didn't know every one of her sisters had breast cancer and her youngest brother had prostate cancer. So all of that would've probably tipped me towards being more high risk and should've been more closely followed. But my PSA was always reasonable. The unusual thing that would happen, you see my bike back there, I would bike to my appointments and that can affect your PSA results. So I'd get the tests, they'd be a little concerned. They'd tell me to stay off the bike for three days and go back and retest, and then the numbers came down and they weren't so concerned. And so all in all, I was followed closely, but I think I got caught out a little bit by the pendulum of we've been over treating, let's not do that.

My urologist was very much of the idea of it makes no sense to go and biopsy and miss something and then MRI and then biopsy again. And then I somewhat lucked out in that the biopsies weren't available anyway during the pandemic and the MRIs came through first. So that came back with, there were two lesions that were suspicious for clinically significant cancer. And we talked about that, and even at that point, I wasn't diagnosed with cancer. They just knew where to look. So when I got the biopsies, they took 12 samples plus three targeted samples, and everything came back. Gleason 10, Gleason nine. My lowest score was Gleason eight, every single sample. So they never really needed to know where to look. It turned out.

From there, we discussed the treatment options because of my upper urinary tract symptoms. They recommended that I do do the prostatectomy, but then they said, "We think you're eligible for this trial here. We think it will, given your very high risk profile, let's go with it here." And this is one of the lucky things to be living in this years in this location. People come from all over the world to come to Boston to meet with medical experts. It would be like living in Rochester, Minnesota as well. So experts in the field were looking at me. And so I enrolled in the Proteus clinical trial, which was reversed the normal order of things in a little bit, but still standard of care. Start with hormone therapy plus either apalutamide or a placebo. And I'm sorry, I forget the apalutamide brand name. And then the robotic-assisted laparoscopic prostatetectomy. And then if I had positive margins, I would have salvage radiation. And the biopsies made it clear it already spread outside of the capsule. That was the other thing, moving it there.

So the post-surgery pathology, that came back with positive margins, but they took out a lot of my local lymph nodes and it hadn't invaded any of those. So the salvage radiation is what I did. So I spent that whole year in treatment, except, surprise for everyone, I didn't use to stutter way back when. I had pretty severe rain from all the treatments. And so they withdrew me from the trial after the surgery and then all indications were that we probably had successful operation and salvage, and they didn't feel right about putting me back on ADT if I didn't need it. And so I started going to rehab to try to get back to work. And then Valentine's Day of the following year, 2021, my PSA was no longer undetectable and it was at that point doubling every month.

The first thing that came through, I wouldn't say mood swings. I always were on borderline crying during really emotional movies, but now we were watching Bridgerton and I spent most of the series crying with laughter, crying with joy, crying with sadness, and essentially yelling at the TV, "Tell her you love her," and finding things funny that my spouse didn't find funny, laughing literally on the floor. That was the first ones. Right behind that was me realizing I started making mistakes more often. And so the brain fog came up pretty fast, and along with that, the hot flashes and frequent long hot. So that was where everything started. Then this stuttering came in. I had fatigue, but I've always been active, so lots of walking and stuff. So that helped a lot with the fatigue symptoms. And then I got a tender breast growth.

The hot flashes were hard in that it made it very hard to cuddle. I missed hugging and I miss cuddling most of all. The tender breasts don't bother me that much except for when I run from time to time, and trying to find bras that fit man is hard. I will still be looking for those for a while. The brain fog ended my career effectively. I had accommodations at work. My director refused to provide them, so we ended up settling out of court for the way I was treated. I'm a software engineer, so he just couldn't take that I'm still very good at what I do. I just slower than I used to be, and that combination he couldn't count on, even though all of the paperwork said I should have more time to do things.

That happened very fast. The PSA jumped because I was still, even though I had stopped the protocol, they still wanted to follow me on the Proteus. So I had to get a bone scan, CAT scan, and the PSMA PET scan right away, early enough that it was probable that they find anything. The protocol, I can't remember the exact level, but nobody was surprised that we didn't find anything. The hardest thing for me was the PSMA PET scans came back equivocal, meaning they found four places where they thought equal chance at being cancer or not cancer. So I spent the rest of 2022 basically growing my cancer so we could find it.

The trial follows you and has standby metrics to try to, because it takes too long to wait for us to die. So they use biochemical recurrence and scan positivity as two markers that will stand in for how long we'll be around. We have six months of not on treatment, hoping that it was only metastatic, so just a few places that they could do metastatic directed treatment. And they didn't want to test me any more than every six months because of the dual radiation exposure from the bone scan and the PET scan.

The second PET scan located finally spread to my spine, my iliac crest, my pubis, and a distant lymph nodes, one near my heart and one up near my neck. And those were the ones that bothered them the most.

The protocol said then to keeps scanning again every six months. And when I was restaged to metastatic, I officially exited the program.

I had already left it before because of the side effects of the treatment, but I felt very strongly that even though I didn't exactly fill all of the study protocol, that part of the reason why going on the study in the first place wasn't just for me. It was trying to help learn for guys coming behind me. And so I wanted to make sure that they had the data that they needed with whatever. If I'll be an asterisk in the report or I'm going to be excluded, it doesn't matter, but I wanted to make sure they had that choice.

It was a very simple process. You get an injection early in the morning for me. The wonderful thing was because I'd had the bone scans and they come back in with this little tiny lead box, and for the PET PSMA scan, it's a big lead box. But other than that, it was exactly the same as the bone scans as far as the prep goes. And then I was given three hours to walk around the area. Longwood Medical area is right near Fenway Park. It was a glorious fall day. So I just did that. And then came back in and the PET scan itself was pretty fast all things considered. It was a combination PET and CT scan, both are being done at the same time. You don't have to hold your breath or anything like that like a regular CT scan. It felt like a very, very quiet MRI because you're just lying there for about 15, 20 minutes.

Immediately go back on ADT, but they wanted me to go with Orgovix Relugolix because if I had to pull back out of the ADT because of the brain effects, they wanted something that would leave my body pretty quickly because I've still not been unblinded, so I never knew if I have apalutamide or not. So we chose to go with abiraterone as the adjunct to the ADT. And the interesting thing there, I was denied coverage by my company's healthcare of the Orgovix because they thought I should go with Firmagon first, but my team was very opposed to that because Firmagon has a very long half-life. So I'd be back to if we had to pull the plug on my treatment waiting six months for it to get out of my system kind of thing and they didn't want to put me through that. I lucked out. I live in a town with a wonderful charity, Sanborn Foundation, and they help people with cancer who live in Arlington who have circumstances like this. So they were able to pick up the financial toxicity of my healthcare decision and help me pay for my drug.

The plan was for me to consider being on intermittent ADT so that we could manage the symptoms, the side effects. I've had no symptoms from the cancer itself, only from the benign hyper BHP.

I've been lucky that way. The brain fog did come back and the stuttering came back. I've had times where the stutter's gone away, but it didn't come back any more severely than it did the first time around. And in the meantime, the occupational therapy I had helped me manage my brain fog a lot more.

We stayed on the ADT for a long time. In May, I started my vacation. Just this past month, my PSA is no longer not detectable, but we're going to test again in March and then we probably will go back on. And this will be the pattern for as long as I can see. Their prognosis? They know I have really aggressive prostate cancer, but they also know really responds to treatment, so we don't know where it's going to go.

Estradiol, which helps with the hot flashes, and Lexapro as well, which helps with mild depression and the hot flashes. I have to take some vitamins for bone strength and because one of them just has shut down vitamin B12 for whatever reason, but it's just taking a couple vitamins a day is to solve that. The wonderful thing that's happened during this whole time is the healthcare information laws, the patients get access to their test results right away, really helpful when the results are good. And that's been most of the times. But man, the time that it's not good, it's tough week while you wait to talk to your doctor. But even so, I found that spending the time during the day to confront all my fears about how bad this news might be, let's me sleep through the night. So I've gotten a lot better with the blood test stress, the scan stress. It doesn't last as long and it doesn't go as deep. And then, yeah, just focusing on, we don't know how long, and it could be quite a while. And so in the meantime, I'm focusing on, I call it living with cancer rather than fighting cancer or anything. Just want to live my life as best as I can with my spouse.

I was able to get restaged a lot earlier and then placed back on treatment a lot earlier. I haven't had a follow-up bone scan since. I don't even know still if the bone scan would notice that there's anything there. So we caught the metastatic disease pretty early. That's just the bad news was we caught it and it was spread too far to be doing anything other than systemic. But that was a complete relief. The disease that's hiding that you don't know where it is is a lot harder to live with than knowing where it is.

Yeah, the bone scan showed almost nothing and the results were always just, it's probably not.

We have, again, radiation oncologists that I know recommended this place. Healing Garden is the name of it. And I do a couple of group therapy sessions there. One is writing your way through cancer, and the other is a group that all have metastatic cancers of different kinds. Talking in a group and knowing that we're not alone and sharing intimately how hard this is at times, I don't want to sugarcoat it. This is a hard thing to live with, but having people that you can rely on is really huge. I'm in therapy as well, individual therapy, huge. I've never done it before in my life. And so this has helped me tremendously. And I'm very active at my local house of worship First Parish in Arlington. The minister has been wonderful with me. I actually gave a sermon about living with prostate cancer. So I'm really out about this. And I think that's so important that people know that there's somebody that they know, even if they don't know them well, to be able to ask questions when they face the same things. And I've been able to help several guys and their spouses on first diagnosis over the past few years. So it goes both ways, basically, taking good care of yourself first, but then also taking care of other people in the community is helpful.

You will be frightened at first diagnosis. You will be frightened when it recurs. That's no way around that. That's a big change of life, but get good advice from medical professionals, know that right now the care that we're getting is... All the drugs we're talking about didn't exist when I was first diagnosed. So there's been a lot of progress. We don't know how long we're going to be around and we'll probably be around longer than you first fear, and just keep living your life and make sure that you don't let it take over everything.

Last bit of advice, ask for help if you've never asked for help before. Americans are horrible at asking for help. We're supposed to be strong individualists. You don't have to do this alone. Find resources. Your doctor will often be a place where you could find out all the places that aren't what you would think of as medical care groups, therapy sessions, these sorts of things. They all help. They all help a lot.

Thank you for having me and giving me this opportunity to share. This has been a wonderful conversation.