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Ask the Advocate: Coping with the Side Effects

It’s one thing to be told “you have prostate cancer“, but then you have to shoulder the weight of everything that comes after, including coping with the side effects of treatment. In this edition of our Ask the Advocate series, our advocates share their experience managing treatment side effects.

How do you cope with the physical side effects of prostate cancer and treatment?

Will:

It’s not easy to walk around and carry on a normal life when you know you have cancer. It doesn’t go away by itself. Your choices narrow. So you feel some extra weight that is more emotional than physical, but it can contribute to fatigue. Post surgery, the biggest challenge is being patient. Who wants to be incontinent for an indeterminate amount of time? Who wants to experience ED? I’m finding, almost two months into my recovery from robotic surgery, that seeing improvement makes it easier to accept a longer time frame for full recovery. If I can manage this for two months, I can manage it for four or six. I didn’t have that perspective at the beginning of my recovery.

Greg:

After the radical prostatectomy, my biggest concern was sleeping with the Foley catheter. I live alone, so there was no one to worry about other than my own needs. It was easiest just to sleep in my recliner chair, so I did that. I never used the leg bag, it filled too fast, so I would put my large bag in the garment bag I come home with from the hospital. One suggestion I have is to bring leak protection with you to the urologist office if you have your catheter removed there, or at least ask for a pad there. I leaked into my underwear after I had mine removed, and I was at the pharmacy — talk about embarrassment. You can remove the Foley yourself in the shower, just by cutting the water balloon on the side and the inserted part just falls right out. I did this after my 3rd bladder ectomy. If you have radiation, you might burn. Get Triamcinolone Acetonide Cream, it helps. Luckily a work friend’s dad had extra left over from his cancer treatments, and gave me the rest of the jar. If nauseous, eat ginger (I ate ginger snaps), it helps too. Now for the hormone injections, best to take the day of injections and the next day off of work, you may get grouchy. I usually scheduled my shots for Fridays.

Simon:

Coping with the physical side can be hard for many men. The side effects of surgery or hormone therapy can impact masculinity in many ways including strength, stamina, and of course erectile dysfunction. While ED can be improved with Cialis or Viagra it’s not a total cure for some and can really only be dealt with in a strong partnership with one’s spouse. The other effects are best dealt with head on by increasing physical activity in conjunction with training with a cancer rehab specialist.

Do you have any advice for coping with the mental or emotional side effects of prostate cancer?

Todd:

My advice is simple: “live your life.” Exercise is paramount. I wasn’t the type to exercise though. I use to run a lot. That’s about it. Once upon a time, I was a marathoner. My only athletic claim to fame was keeping pace with Alberto Salazar for the first 2 miles of a 10k one October. After those first 2 miles I settled into a human pace. I sure didn’t feel like exercising after a month on Lupron. My wife got me off my butt. She kept me moving. We started by just going for a walk. Soon after that our walks always seemed to have a hill somewhere in them. I hated them at first but I felt better afterward. I eventually looked forward to them. We worked up the mileage and terrain. Sometimes we would jog part of it. We bought bicycles and started alternating between walks, hikes, and rides. We bought kayaks and incorporated those into our routine. (Technically the kayaks came first and my wife bought the bikes and the boats.) We now dedicate a portion of each day to getting out and moving. My only other advice is to laugh loud, long, and often. Cancer hates laughter.

Len:

Learn all you can about prostate cancer from your medical team and by studying as much as you can online. You’re in for a battle, so just like we’re taught in the military, know the enemy. Learn the alternatives, and by knowing them, question medical decisions you have questions about. This is your body and your life — take control.

Read Part II here and Part III here of our Ask the Advocate series.

Comments

View Comments (5)
  • ninaw moderator
    6 months ago

    Absolutely not too much detail, @dmv1990. Since this is an anonymous site (as long as your username isn’t your legal name, which I doubt!) it’s a good place to share those kinds of things. I think you really hit it on the head with “knowing what to expect.” So many guys in this community were fairly blindsided by how affecting the side effects were. I’m not sure if I’ve ever linked the Q&A’s to you, but if you ever feel like providing more info from your experience, they’re a great place for it: https://prostatecancer.net/q-and-a/. – Nina, ProstateCancer.net Team

  • dmv1990
    6 months ago

    I

  • dmv1990
    6 months ago

    The most helpful I can say is “BE PATIENT”. I felt I had turned the corner and was getting better only to go back a few steps with effects coming back. Listen carefully to what the doctor says. My surgeon was correct about the post surgery side effects. The incontinence is not pleasant but it generally does not last forever. The ED is not pleasant but often there are options to try and see if something will work for you.
    I went through a lot of clothes at first. With a weight restriction I felt I couldn’t do anything. I felt my equipment was almost gone. Small and limp.
    I kept doing the kegels. The incontinence was better at times and then it would come back . Not real bad but back. I was taking Viagra post surgery. Sometimes it worked. Sometimes not as well. I did have nerve sparing surgery on one side so I did expect some return of function. Little by little things got better. Things are not like before the surgery but better.
    If you have questions about anything health related, ask the doctor. Try not to be embarrassed. The doctors know this is a difficult time for people and they are glad to help usually. If the doctor is not helpful or you do not have a good repoire change doctors if possible. Get second opinions. Do your research. This is a big deal for your health. Treat it as if your life depends on the the decisions you make. It does!
    I am 8 months post prostatectomy. I hope you will find some of this helpful. Hang in there!

  • ninaw moderator
    6 months ago

    @dmv1990, this is incredibly helpful and I will certainly share this article and your comment with others who come looking for support or advice about side effects. Especially the aspect of constant change, that things can get better but then worse. I’m glad you’re able to take a long view and see that things can change again for the better. Thank you for your experience here. – Nina, ProstateCancer.net Team

  • dmv1990
    6 months ago

    You are very welcome. I just wish I had listened to people better. Several people including the surgeon told me how things would progress but when you’re living it is somehow different. When you get a cold, you feel crummy but you know what to expect. This is a roller coaster ride.
    I was blessed because the surgeon was able to spare the nerves on one side. It does take time for those tissues to heal however.
    I was somewhat concerned that I was getting to detailed and graphic in my other note but I tried to put into words exactly what I would have liked to know.

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