A public conversation about prostate cancer

~ The Advocate Asks ~

Community leader Peter Manoogian shares his experience of being diagnosed with the disease and his treatment

  Editor’s Note: The Saugus Senior Center will host a new community-based group that will focus on prostate cancer awareness at 10 a.m. on Jan. 19 at the center. We decided to reach out to one of the organizers of the upcoming forum – Precinct 10 Town Meeting Member Peter Manoogian – a lifelong Saugus resident, who agreed to share his own health experience after being diagnosed with the disease and treated. Manoogian is one of three longtime community members who will discuss their experience with the disease at the upcoming forum. They will share what they have learned with participants to inform and encourage men and their partners about the importance of accurate screening and detection. The goal of Saugus Prostate Awareness is to raise awareness of prostate cancer, to encourage men to seek screening, to share personal experiences and to provide suggestions for participants. While this disease is specific to men, women are welcome and encouraged to attend the group meeting. For more information about the meeting or to register, please call the Senior Center at 781-231-4182. Highlights of this week’s interview follow.

  Q: When did you learn you had prostate cancer?

  A: I was diagnosed on April 7, 2021.

  Q: What were the major symptoms? Is frequent nighttime urination one of them?

  A: Frequent nighttime urination is not considered a symptom. It can be associated with prostate cancer, but the main symptom is a steep increase in your PSA [Prostate-Specific Antigen]. Once it goes over 4.0, bells and whistles should go off. Mine went over 4, and then I found in another blood test that it was 5.9. A steep rise in the PSA in a short period of time is an indicator that you should have the MRI on the prostate and have it looked at.

  Mine was hovering around 2 for many years. In 2017, it started to climb. On Dec. 10, 2019, it was 3.99. On January 4, 2021, I was 4.49. On March 17, 2021, it was 6.11. On March 31, it was 4.94.

  Q: So, if you weren’t paying attention to your numbers, you might have prostate cancer, but you might not know anything about it until it was too late?

  A: Bingo! Having a PSA that has a sharp rate of increase in a short period of time is what you want to be concerned about. Part of your physical should be a PSA test. And don’t assume that your PSA is being tested when you go for your regular testing. You should request it – and not just one – having it done over a period of time is important.

  Q: Do you have a family history of this disease?

  A: My older brother had it 11 years ago, and he had treatment. Two of my first cousins had it. Family history is one of the factors, which is true with my family. Having a father or brother with prostate cancer doubles your risk of having this disease.

  Q: What are some of the other factors?

  A: Diet is a factor. Stress is a factor. Prostate cancer feeds on testosterone. Other risk factors are race and ethnicity. For some reason, African American men have a higher risk factor. Prostate cancer is more common in North America and Northwestern Europe and in your industrialized countries and less prevalent in Asia. Even in America, Asian Americans have a lower risk of having prostate cancer, but it’s higher than their counterparts in Asia. With veterans, a possible exposure to Agent Orange could be a factor, but it’s not definitive.

  And, sadly, ethnic minorities may not get screened as often as they should. And Saugus is becoming more diverse ethnically.

  Prostate cancer is more likely to develop in older men and in non-Hispanic Black men. About six cases in 10 are diagnosed in men who are 65 or older, and it is rare in men under 40. The average age of men at diagnosis is about 66.

  Q: So, what about Saugus?

  A: The men in this community would be more at risk because it’s an older population. The 2020 U.S. Census has revealed that the median age of Saugus residents is 48 compared to the state [median age, which] is 39.4, [which] suggests that prostate cancer could be more commonplace in Saugus compared to the state.

  As you get older, the risk gets higher. There’s a saying out there: More men die with prostate cancer than from it.

  Q: What was your treatment program?

  A: I selected surgery – the removal of my prostate. I made a decision that was best for me, for my particular goals and my particular cancer – being on the edge, it was ready to break out. It was bulging up against the edge.

  Q: What were the results?

  A: They took out my prostate and my PSA is undetectable. I will be having my PSA tested for the rest of my life. It’s just like having your A1c [average blood glucose] tested or your blood pressure tested. You learn to live with your diagnosis. But you have to do your own research and ask a lot of questions – and be your own advocate.

  Having your PSA done at various points and compared over a period of time is a surefire way of determining whether you have prostate cancer. But a high number doesn’t necessarily mean you have it. You can have a low PSA under 4 and have a very aggressive prostate cancer. And you can have a high PSA and not have prostate cancer. It’s the sharp increase in the short period of time that should be the major concern.

  Q: How long did it take you to get it under control?

  A: On Nov. 2 [2021], it was 5.91. On Nov. 8, I had the surgery. On Nov. 12, it was at 1.63. On Dec. 20, my PSA was .03, which is considered undetectable.

  Q: What were the challenges?

  A: The uncertainty – the anxiety of not knowing what you’re facing – your heart is in your mouth every time you have a PSA test.

  There are so many variations of treatment of the disease that it really challenges you to do a lot of research to not only understand the nature of your prostate cancer, but to select the form of treatment that is best suited for your cancer and your particular goals. One of the concerns men have is about incontinence; they worry about leakage. If that becomes your top priority, you communicate that to your doctor.

  Q: So, what worked for you?

  A: The best thing I think you can have done is an MRI. That would identify any lesions that are present. But you need to talk to your doctor about things that are important to you.

  And one of the important messages I can pass on is that you’ve got to be your own advocate and do your own research. That includes information you get from friends and acquaintances from various social circles – people who had it or have it. There are two prominent people in town government who have dealt with this in recent months. You would be absolutely amazed by how many people are dealing with this.

  If you choose surgery, you want to find a surgeon who has done thousands – not hundreds. And most of these surgeons are in the Boston hospitals.

  A common question that is asked of urologists who notify patients of a diagnosis: “What would you recommend if you were telling your father, Doctor?”

  If you have radiation, it’s generally more difficult to have surgery if the cancer comes back. If you have surgery, you can always have radiation. But it’s more difficult to have the surgery after radiation.

  When it comes to treatment, you have to decide what’s best for your situation; you try to pick the best of many bad choices. Can you imagine going to the hospital and worrying whether you have to wear a diaper for the rest of your life?

  Q: What is your status now?

  A: Right now my PSA is undetectable. They took out my lymph nodes, and I didn’t have any cancer in my lymph nodes.

  Q: Please tell me about the upcoming forum.

  A: It will be at least an hour. We’ll be social distancing and with face coverings and at least six feet apart – following the COVID protocols. This is for anyone who has questions or concerns about prostate cancer and for anyone who wants to share their experience. We want to point them in the right direction. This is basically an outlet for men who got a diagnosis. We want them to recognize that this is common, and that this is the second leading cause of death behind heart disease. Sharing information can be helpful. Not only for the recipient of the information, but for the giver as well.

  Q: Why have you decided to go public?

  A: I was partially inspired by Theresa Whittredge [the late wife of School Committee Chair Tom Whittredge]. She was very public on social media on what she was going through with her cancer. She went out of her way to share her experiences on social media. I messaged her and she messaged me back. She was a warrior and fought the fight. (She died of metastatic breast cancer in November.) And prostate cancer guys consider themselves to be warriors.

  Q: What do you hope to accomplish by this upcoming forum?

  A: To help at least one person; have people share their experiences. We’re not going to advise people on what the best treatment is for them, because every situation is different. We hope to increase awareness. The ultimate measure of success will be a year or two from now when somebody tells us that they addressed their prostate cancer because of something we said. We want to create an awareness and make sure men get their PSA tests. A lot of guys don’t go for a checkup. And, all of a sudden, they get a pain in their hip.

  I want to make it clear that we are not dispensing medical advice. We’re just advocating for screening. Our whole goal is to get people there on January 19 who can benefit by sharing information and experiences and raising their awareness about prostate cancer. Believe me, if you get this disease, your goal is to die from something else. If you catch it early, it’s treatable. I don’t want to see anybody go through the unnecessary pain and suffering of prostate cancer. For guys who die of prostate cancer, it gets into their bones. They don’t get medical checkups, then one day they get a sore hip or sore back.

  Q: Anything else that you would like to share with our readers?

  A: It’s very treatable when it’s detected early. About 2.9 million American men count themselves as prostate cancer survivors.

  There are a lot of famous people who have been treated for prostate cancer: Colin Powell, Roger Moore – 007, Elton John. Even John Kerry had it when he was running for president. Survivors include actor Robert De Niro, former California Governor Jerry Brown, movie star Ryan O’Neal, pro golfer Arnold Palmer and former Yankees Manager Joe Torre – he was an outspoken advocate about prostate cancer awareness.

  We want women to be involved in this program. Often the wife winds up becoming the Florence Nightingale and is actively involved in her husband’s treatment, so we feel women should participate.

  And I can’t stress enough that you’ve got to be your own advocate, to ask questions and do a lot of research. It’s a very treatable disease; it need not be a death sentence; and in many cases it isn’t. But men need to get their PSA tests and checked out regularly. It’s very beatable with early detection.