Neha Vapiwala:

Hello and welcome to our latest episode of Prostate Cancer Patient Voices. My name is Neha Vapiwala, I'm a radiation oncologist at the University of Pennsylvania where I have the privilege and opportunity of helping men with prostate cancer as they navigate the challenging journey from diagnosis through treatment and beyond.

And today, I'm especially honored because I'm joined by a patient who is incredibly special to me, not only as all my patients are, but in particular because of his openness and his willingness to share his experience so that others can benefit. And here I have Mr. Todd Greco. Welcome, Todd, to our Patient Voices session.

Todd Greco:

Thank you. Glad to be here.

Neha Vapiwala:

I know this really started for you about five years ago. So in 2021, you had routine screening for prostate cancer. And as part of that workup, a prostate MRI was done, which suggested that there was a suspicious lesion, and that led to a prostate biopsy that did in fact confirm the presence of prostate cancer. And furthermore, that prostate cancer was of a more aggressive variety.

With that diagnosis, then presumably discussion with various specialists, you did elect to undergo prostate surgery, and you had this at the end of 2021. And then after that, you essentially were healing and continuing to recover from the surgery and following your PSAs as is typically done in this setting.

And around 2025 is when the PSA was noted to go from essentially undetectable levels to 0.3 and then higher than that 0.35, at which time medication therapy was started. And we'll talk about that hormone therapy after which a PET scan around that same time also demonstrated some lymph nodes.

So is that a pretty good summary of how we got here to date?

Todd Greco:

I think that's pretty perfect.

Neha Vapiwala:

Oh, well, thank you.

Todd Greco:

You've nailed it.

Neha Vapiwala:

And so I guess what I'd love to hear from you, and I'll kind of set the stage, this term biochemical recurrence, right? It's sort of this very technical sounding term, but really what we're saying is after surgery for prostate cancer, the hope is always that the PSA will go to undetectable or zero and stay there.

And when it is rising from that zero to something measurable and clearly showing a trend upward, it can really be an incredibly uncertain emotional experience, even if you're physically feeling well and really have no symptoms to speak of. So I'd love to hear from you, Todd, and I think our listeners would really benefit from understanding what you were thinking and feeling when you first learned about the rising PSA after surgery.

Todd Greco:

It really came as a little bit of a surprise to me. I knew it was always a possibility. I had my prostate completely removed and I was fortunate I had four years where I had no recurrence. So I was coming up on my fifth year, which is considered a cure, and I came back from a bike ride. I would ride my bike. To your point, I felt excellent. I've really felt great. I did two 30-mile bike rides back to back. And I came home, jumped in the shower.

And after my shower, went to pick up my underwear and saw blood in my underwear and immediately called my surgeon. And I just knew, I don't know why I knew, but I knew it had come back. And emotionally, that was very, very difficult to hear because I really though that I had really beat this thing, but it just makes you more aware that you have to continue with your follow-ups every opportunity you get, ask lots of questions and continue to follow up as frequently as possible.

Neha Vapiwala:

So in that setting of biochemical occurrence, usually radiotherapy to the prostate bed, typically with the lymph nodes, and hormone therapy are pretty standard treatment. And I know that's ultimately what you selected. What information and conversations did you have during that time that helped you feel comfortable making that choice? Or did you feel that you had a choice?

Todd Greco:

Looked into as much as I could, and I just came to the conclusion that I'm never going to be younger. I'm never going to be healthier. I'm never going to be stronger. Let's do everything we can at this time to eliminate this. For me, it was not only the biochemical recurrence that possibly came from the prostate bed, but I had the seven lymph nodes that were lighting up as well.

So I just wanted to get rid of the lymph nodes before they spread anywhere else. So that was really what was going through my mind. How do I do this? Come up with a plan. Fortunately, working with you, I felt confident with the plan that we came up with and just wanted to move forward. I think you always feel better once you have a plan.

Neha Vapiwala:

In your case, Todd, when we learned after the surgery that unfortunately the PSA had gone from undetectable to measurable, and that prompted what we use these days in these cases is typically a PSMA PET scan.

And so putting together both the PET scan findings and then the PSA in the context of your surgical findings, generally the standard of care treatment in that setting is to do hormone therapy, and that can sometimes be a combination of two medications, what we call intensified androgen deprivation therapy, and typically giving that for a number of months, particularly if you have some of these bigger lymph nodes on the PET scan.

In terms of the hormone therapy, and I know you were on two medications at a time typically throughout your course.

Todd Greco:

Correct.

Neha Vapiwala:

What did you expect? What side effects maybe were a surprise that you maybe thought, "Oh, it'll be different" or don't recall necessarily expecting? And how did you manage getting through that experience in particular before we started the radiation, before we met?

Todd Greco:

As a family unit, I think we've decided that this was going to be my new job because I'm retired, and this is what I was going to focus on. And what I did was I would make sure I got my exercise every day, I ate healthy, I cut back on the amount that I drank, anything that might set off any of those side effects. And I had all of the side effects.

There wasn't one that I did not get, but I think from talking to other men, my side effects may have been lessened just by taking those important steps. You can't undervalue exercise. It keeps your head clear. It releases endorphins. It makes you feel better. You don't have the sluggishness. So many other people told me they would sleep all day on the hormones. The hot flashes, I just chose to think every time I got a hot flash, "Good, that means the drug is working. It's eating the testosterone." Is what I would say to myself in my head.

They don't really last that long, but they are annoying and unfortunately they come at night, so it would keep me up at night. So I am in a fortunate position that I was able to take a nap during the day. I do a half hour power nap every day at two o'clock, but the side effects are real. The fuzziness in your head, forgetfulness, the hot flashes.

So this became my job and I every day did my job. I went out, I exercised, I made sure I was eating properly, got good sleep, and try and keep your stress to a minimum. I know it's harder to do than it sounds or harder to do, but doing those things really helped me. I've done so much better, knock on wood, than so many men that I talked to.

And even when I'm in the waiting room for my radiation, they would tell me how hard it was. And we're asking, "How do you get in here and be so positive?" And I think it was because I just really took it as my job. This is serious and I want to hit it hard. Again, I'll never be younger or better shape, so let's do everything we can right now.

Neha Vapiwala:

That's so beautifully stated because I can tell you that mind over matter perspective, your optimism, and your purpose, like you said, it was your job. And this sense of every time I experience the side effect, reminding yourself of why you're doing it, what the longer term goal is, and in the meantime, taking these measures, these mitigating measures of diet and exercise and how you spend your time and how you adjust, I think is really critical to at least not avoiding the side effects, but perhaps lessening their impact.

And so I really appreciate just again, how honest you have been just now with your experience, but also how inspiring, because I think it is very easy to go down that spiral of just thinking about all of the negative side effects and then letting that then dictate how your day and how your perspective goes so...

When you started the radiation, how did that affect your daily life, your job, so to speak, of focusing on the hormone therapy, physical and mental wellbeing? And how did you try to maintain your quality of life during the radiation treatment?

Todd Greco:

So for me, it was a little bit extra hard because I had to leave my family to get close to Penn because I live far away from it. So it was literally two months of radiation, daily radiation, and I would come home on the weekends. So I tried to treat it more like, again, like work where I was traveling for work and I was gone for the week and would come home on weekends.

The first day was overwhelming. They walk you through the process. It's actually, the radiation is the easiest part of everything. It's very quick. For me, it was completely painless. I've talked to other people who've talked about needing creams because I had burns, et cetera. I've never experienced that. And the people that I've talked to were mostly women who had breast cancer, so I don't know if that's a common effect for radiation for prostate cancer, but I never experienced that.

The techs in the room were so reassuring. They were fun. We were laughing actually. I'd show up and we'd be laughing. Anyone who's got to face radiation, just realize it is not hard. The hardest part is making yourself get there every single day. And again, I'm very fortunate because I was retired. I can understand why it'd be hard for a man who was working to do the same thing. If you live far away for two months to be away from your family, it's very difficult. That was probably the most emotional, but the radiation was fine.

Neha Vapiwala:

That is incredibly poignant and important point that you made, which is that it can take a toll if you have to be away from your support system. But thankfully for many patients, if they have radiotherapy and radiation oncology expertise closer to home that they are able to go to, at least for those that are working, that can be an option. But I think such an important part is getting as much as you can of the information that you feel comfortable with before you take on the treatment.

And as you said, that first day can still be nerve-wracking, but having the therapist walk you through it, getting into the routine, finding that comfort level, such an important part of that is just communication and discussion with your care team about what do I expect and what's this going to be like? And am I going to glow? And am I going to.

There's no question that's off the table. I have to say it's all fair game. So would love to hear from you, what conversations with your healthcare team from surgery, through the hormone therapy, radiation, any component, helped you feel informed, supported, confident? What role did that play?

Todd Greco:

I did a lot of investigational work before as soon as I found out that I had prostate cancer. So right after they took my prostate, I actually went to another radiation oncology facility and just asked for a walkthrough. So I think the more information you have, the better. Be prepared with your questions.

And they were some of the questions I had. How is this going to affect my body? What are the side effects going to be? How long do I have to do this? I guess I would ask more questions and possibly talking to somebody who had gone through the same thing would probably have been helpful in hindsight, who actually recently got off the table and finding out what their experience was like.

But I really have to say my experience was not bad. And if I can inspire anyone to just be a little bit calmer about the whole thing, it's not what you think. The longest and the most annoying part, and you'd really just have to get your head around it, is you're going to be there for a little while. The radiation itself is maybe 10 minutes at most, and just expect to lose your modesty. Other than that, it's fine.

Neha Vapiwala:

Thankfully, we're all friends, so it's okay.

Todd Greco:

By the end, it was great.

Neha Vapiwala:

And I think it's important for all patients, it's not always easy to achieve that kind of comfort level with their care team, that openness and that ability to ask those questions because sometimes if you keep those questions in and you're wondering and heaven forbid, you go online and you read something that's not relevant to you or that might be inaccurate, you can easily go down rabbit holes.

And so hopefully I wish for every patient everywhere with any diagnosis to find at least one person on their care team who they feel comfortable with, who they know no question is too silly or too basic. And I do hope that we strived to give you that when you were going through your treatment.

Todd Greco:

No, you absolutely did. And I think it's important for patients not to be intimidated. The doctor is there to help you. The nurse is there to help you. The tech is there to help you. I don't think people go into that line of work because they want to do harm. They do it because they want to see you do well.

Everyone was positive and there would be no reason for me not to just ask questions. I never felt intimidated or frightened. It's a scary process, but the people doing it are not.

Neha Vapiwala:

No, that's so well said. Thank you for that, Todd. And I guess in closing reflections, is there anything you'd like to share for patients and families who are listening who might be navigating a situation of biochemical recurrence after surgery? Anything that you'd want them to know?

Todd Greco:

Just face it head on and dive right in. Do what you need to do. Hopefully I will go back into remission. I was fortunate to have four years of remission. If I can be like your other patient who got 21 years of remission, I'd be pretty happy. But I look at this as this is going to be an ongoing process. It's never ending.

So I'm always looking at what other options I have available to me and trying to stage my therapies appropriately so that my therapies will last me until God willing they find a cure for this. So I don't believe we're that far off. So if that's the case, that would be fantastic. Family is very important. Your support, the people around you. There's nothing I can say about how important that is.

Doing your own research, but not doing so much research that you scare yourself to death. Make sure that wherever you're looking is a reputable place online. Once you go online, you're going to be besieged with a bunch of junk that is not accurate. Don't let that scare you. And when you have a question, ask your doctor, ask your nurse. You can always send them an email.

You don't have to call them and bother them and don't feel like you're bothering them. Send them that email. And just know that this is probably an ongoing process and don't miss your appointments and keep up with everything that's coming down the pike so you're not taken off guard. Again, this is my new job and I need to take it seriously and I need to make sure I'm here for my family.

Neha Vapiwala:

And I just want to tell all the listeners, really, the key importance here is individualized care and open communication with your healthcare team so that whatever your situation may be, that you can also have an experience that leaves you in a position as wonderful as Todd's. So thank you for joining us today. Again, Todd, thank you so much for sharing your time with us.

Todd Greco:

Thank you for all you do.