Since April 2013, Pat and Mike Looney had been dealing with Mike’s prostate cancer. They had turned to top doctors to treat his aggressive disease and rode a rollercoaster of treatment after promising new treatment—always followed by signs that the cancer was growing again.
So, in 2019, the last thing they expected was for Pat to receive her own cancer diagnosis.
Here, Mike shares their story, what they learned, and how it led his family to establish the Pat Looney Educational Series for Client Empowerment—a collection of webinars funded by his daughter Caitlin [pictured with Mike above] that provides critical information to people dealing with cancer—here at Cancer Commons.
How were you first diagnosed?
My original diagnosis was in April 2013. Previously, whenever I’d had my PSA [prostate-specific antigen] levels tested, I was in the 1 to 2 range, but then it jumped to 6. The physician said I should get a biopsy. But I had just read about how we shouldn’t be testing PSA so much because it leads to a lot of false positives and excessive treatment.
So, we made a deal that I wouldn’t get biopsied yet, but we’d wait three weeks and then test again. By then, the PSA had jumped to 13.
A friend urged me to go to UCSF [University of California, San Francisco] because they have a dream team for prostate cancer treatment there. I went to UCSF surgeon Peter Carroll, one of the gurus of robotic surgery, and he said, “Let me make this really simple for you. You have an aggressive prostate cancer, and we’re going to throw everything we have at it.” That scared the hell out of me.
Dr. Carroll did the robotic surgery, and then I had 35 treatments with radiation, both general body radiation and specific CyberKnife radiation. I started on hormone therapy shortly after that.
It looked like they had gotten it; I was undetectable for weeks or months. But then the PSA started to climb again; the surgery had not been able to completely remove the cancer, and it was growing again.
What were your next steps?
A whole series of treatments ensued from that point on, one after another. We just kept trying different drugs. Each treatment would last anywhere from maybe eight to 18 months. I could always tell when each treatment was failing, because the non-detectable PSA score is 0.05, and as soon as I hit 0.2, just a slight increase, we would start to see a doubling of the score every three weeks. Then we would move onto the next treatment.
Sometimes, using PSMA PET scanning, they would find tumors on my ribs and on my spine, and they used CyberKnife radiation to go after those, which was successful. But at one point in the last couple years, these bone scans revealed multiple tumors in my skull, pelvis, legs, spine, and ribs. The team felt there were too many tumors for radiation this time. I didn’t have a lot of pain, but I could feel it. My PSA went as high as 82, which is just unbelievable.
We decided to do a liquid biopsy test called Guardant360, which showed there was a chance I could be treated with the immunotherapy drug Keytruda. And fortunately, it has worked. My PSA went from 82 to 22 to 11 to undetectable. Today, I’m still undetectable.
It’s been nine years. So I could still die from it, but at the moment, I would bet I’ll die from something else first. I am in no frame of mind to die from prostate cancer.
It sounds like you’ve stayed on top of all the available technologies and treatments during your cancer experience.
I’ve really tried to be pretty active in it. My medical interest was sort of piqued back in the mid-seventies when I left the field of education and became a psychotherapist at a clinical hospital at a university. Eventually I left that and went into the business world. But for a certain extent of my life, I was very much into psychotherapy, and I did some research in that area.
Your wife, Pat, unfortunately received her own diagnosis in the midst of your treatment. When did that happen?
She had her initial diagnosis of breast cancer in 2019. Based on the specifics of her diagnosis, there was an 80 plus percent survival rate. I wouldn’t say we took it lightly, but the surgery went well. But then the biopsy came back, and it turned out she had triple-negative breast cancer, which gives you a five-year timeline to shoot for.
We sort of became the “cancer couple” at UCSF. At one point, we were planning for her to start the same drug as me, Keytruda, but we were never able to administer it. One of the chemotherapies she received attacked her liver, so she actually died of cirrhosis of the liver. It happened very quickly, probably within three weeks.
Even after she had her diagnosis, we would have these morbid conversations about who was going to go first. Everybody in the family believed it would be me, which I was really counting on. Now I’m dealing with all sorts of stuff I hadn’t planned to.
Was Cancer Commons helping you at the time?
Yes, Pat actually first connected with Scientist Emma Shtivelman, PhD, at Cancer Commons after her own diagnosis. She heard about Emma through a friend of a friend who was being treated for pancreatic cancer. Pat’s cancer escalated very quickly, so there was a fair amount of contact with Emma at that time. For my own cancer, I’ve only been connecting with Emma for the past two years or so.
I was Pat’s primary caretaker, so towards the end of her life, I was trying to figure out how to deal with the liver issues as well as the cancer. I was even getting ready to fly out to MD Anderson. And then I had a conversation with Emma, and she told me, “Nope, it’s done, you’re done. Better to just get her home and spend time with her.”
The time for heroics was over. And it was Emma who said that—no physician told me that. Emma tells things how they are, and it is really a blessing.
Can you share more about your cancer journey beyond the treatment experience?
I tend to have a very dark sense of humor sometimes. I remember getting a call from a surgeon giving me my Gleason score and initial diagnosis, and while I was still on the phone, I turned to my wife and said, “Dear, it’s time to buy that boat!”
It didn’t sound like I was going to be around for very long. From the get-go, it was very clear that this was not your average, everyday prostate cancer.
And the subsequent confusion of what to do next is part of what later made Cancer Commons appealing to us as a family: Here you are, you’ve just gotten a pretty dire diagnosis. You go to a surgeon who says surgery is the only way to go. You talk to the radiologist who says you don’t need surgery; you just need radiation. You go to the oncologist who says we’re going to treat this with medicines.
As a layperson, how exactly am I making this decision? You are in a position of making a decision about something you know so little about. It’s potentially your life that you’re dealing with, and you are not prepared. That’s a scary time. It’s unsettling. I’ve experienced massive confusion, almost panic, around that kind of decision making.
What advice would you give to people who are in that place of fear and confusion?
One of my first pieces of advice would be to contact Cancer Commons. For every serious malady, whether it’s cancer or heart disease or something else, there are people who have made that disease the focus of their careers. Their facilities have the best clinical trials, the best residents, the best equipment. And Cancer Commons can help you figure out what are the centers of excellence for your particular situation. Because it does make a difference.
You deserve a second opinion. Minimally and ideally, you would have somebody like Cancer Commons who is willing to spend time with you, to answer questions and understand what your options are. Unless you happen to be at one of those centers of excellence already, your care team might not know what all of the possibilities are, they might not know about all the clinical trials that are available to you. Cancer Commons will have more time than many physicians to help answer your questions and explore alternatives.
My other message would be to not give up. I got a call from a friend whose parent had just gotten a diagnosis of prostate cancer, and they had been told the parent had just six months to live. And my response was, that’s not relevant. What you need to think about is, what are you going to do? What are your options? And it’s caretakers who often have the energy and clear-headedness to go try and figure out if there is something more to be done for their loved ones.
Can you share more about your family’s experience as a whole?
I think the family was expecting that, at some point, my cancer would run its course and I’d run out of treatment options, and that would be it. Everybody was sad about it, but that was sort of the expectation. Then, Pat got her breast cancer, and that threw everybody for a loop. Especially when we got the triple-negative diagnosis; that was really dire and really tough to wrap our heads around. And we had no expectation that we’d be dealing with the cirrhosis issues. We thought we probably had three more years with her. Instead, we had three weeks.
It really affected all of us, my kids as much as me, and we are all dealing with it.
How did you come up with the idea for the Cancer Commons webinar series named after Pat?
We really appreciated what Emma and Cancer Commons did for us, but right now, it doesn’t scale to the number of people who need that kind of support. So the idea is to get Cancer Commons’ experts speaking to larger groups of people. A lot of what Cancer Commons provides applies to many patients at once, so the webinars can get that information out there, and anyone who needs more specific individualized information can sign up for one-on-one help.
The other point is to get the word out about Cancer Commons. My own oncologist had never heard of Cancer Commons, so we want to increase visibility.
My daughter Caitlin funds the webinars. For us, this is a way to honor the role Cancer Commons played in Pat’s cancer treatment. It was important to her to spread the word about Cancer Commons to as many people as possible, so this is part of her legacy.
You also recently launched a nonprofit focused on cancer caregivers. Can you tell us about that?
Yes, it is called Courage Groups, and it is focused on conducting group workshops and support groups for caregivers, for grief, and for healing through storytelling. The caregiver groups will be first out the door. I have also created a Cancer Caregiver Dashboard that serves three purposes: a roadmap for caregivers on how their role might evolve over time, a communications tool to help caregivers stay in sync with their loved one with cancer as much as possible, and a self-assessment tool to help caregivers stay in control and have a plan. I’ll be doing free workshops on the Dashboard and then follow-up support/resource groups for those caregivers who are interested. My intent is to offer these for free. If any readers are interested, they can contact me at mike@couragegroups.org.