Things No One Tells You
4 Things No One Tells You About Prostate Cancer That I Learned While Going Through It
By Henry Daisley
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I was celebrating my retirement after many years working for the transit authority in New York. As part of this new phase of my life, I was going through the process of applying for life insurance. Along with my application for life insurance, I was asked to get a medical exam to determine whether I had any illnesses. Well, I was shocked when my application was declined, because it turned out I had high PSA levels (prostate-specific antigen) in my blood. At my follow-up appointment, I learned that I had prostate cancer. I was only 55.
Once you're told you have cancer, you have all these sources of information coming at you — some are good, some are not as good. So it was very important to me to get a second opinion before making any decisions. The biggest decision was whether I would choose the path of radiation or surgery, and I made sure to avoid making a choice based on emotions. I'm a person with an analytical, research-based background, so that’s the approach that I took. In the end, I elected to do the surgery, and had a prostatectomy in September of 2019. Today I’m clear of cancer, and doing follow-ups with my doctor every six months to make sure I stay that way.
Here are a few things that people don’t often tell you — but that I found to be useful in my own journey:
Beware of “specialty bias.”
One thing I found is that doctors tend to promote treatments that use their specialty or area of expertise. In my case, the radiation oncologist I spoke with seemed to believe that radiation therapy was the way I should go — he kept emphasizing that there is “no cutting involved” as if that was supposed to be the only factor in making my decision. It’s good to be aware of this so-called “specialty bias” that doctors may have, so that you can make the best decision for you. When you talk to a doctor, make sure you ask questions to help you understand both the pros and cons of what they are recommending. If you’re meeting with a radiation oncologist, for example, you might ask: “What are the negative side effects of radiation in the near term and in the long term?” And approach your conversation similarly with a surgeon — delve into the potential negative effects of an operation, not just the positives. And if you get some information from one doctor, definitely utilize it when you talk to the other.
I feel very good about the path I chose because of where I am today. I'm feeling very good, very healthy, and I have the peace of mind of knowing that the tumor was removed. The side effects are not bad at all. They're very manageable. The two main side effects from prostate cancer are incontinence and erectile difficulties or erectile dysfunction. With the erectile difficulties, I’ll just say that they give you Viagra, and it works! That's a very good thing, a very good thing.
I also have a slight degree of urinary incontinence, but it’s not bad at all. They do give you a bit of guidance prior to the surgery; they tell you to try to do kegel-type exercises, where you practice starting and stopping the flow of your urine so that you're familiar with what you're going to need to develop after the operation. By strengthening those pelvic floor muscles, you can control urination.
Get a second opinion, but resist the urge to keep visiting new doctors until you hear what you want to hear.
Someone gave me this advice, which I think is very good: don't keep going to different doctors until you hear what you want to hear. I’m a big believer in a second opinion, but some people go for a fifth, sixth even seventh opinion just because they’re waiting for a doctor to tell them what they want to hear, and at that point, it's not going to happen. My motto is to seek the best possible resources that you have available to you, and if you feel that you've done your due diligence and gotten two — maybe three — opinions, base your decision on that information. You also have to consider that with most cancers, time is somewhat of the essence.
Don’t assume that the treatment your friend had is the one that’s best for you.
I’ve found that in my community, people now think I'm the genius of prostate cancer. But when somebody comes to me to seek advice, I never say, “Oh, you better get the surgery like I did, because that's not right.” Everybody's situation is unique, and there are times when surgery may not be the best option. It’s an individual decision that needs to be made by the patient. Because here’s the thing: If you decide based upon what “John” said or “Joe” said, and you end up having problems afterwards, you may blame yourself for listening to them instead of listening to yourself.
It’s okay to be afraid after a cancer diagnosis, but opening up helps.
I'm part of a men's group, and I had mentioned to one of the ministers that I had cancer. And he asked me, “do you want me to put it out on our group texts, to let people know?” My first thought was, “Oh God, then everybody will know.” But I told him, “sure, I'm not going to hide this.” And when he did that, I started hearing from guys who said, “Hey, I had it too. And I had it too.”
Unfortunately prostate cancer is so prevalent. But you’ll never know who has dealt with it unless you open up.
Once you find out you have cancer, a lot of times the first impulse is to withdraw, because it's a personal issue, and also because you may be afraid. But the thing is everybody has that sense of fear — so how do you overcome it? You overcome it by sharing it with other people. Say to someone you trust: “Look, I got this cancer. I don't know. Am I going to be okay?” That’s how you cope with fear.
This article is for informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please keep in mind every individual’s situation is different, and you should not take any actions concerning your body and well-being before consulting with a healthcare professional.
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