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two feet on a scale. A tiny man struggles to pull the needle down to a lower weight

The Unwelcome Guest: Unexpected Side Effect

For the absence of doubt, the Unwelcome Guest is my prostate cancer; the kind of guest who leaves cigarette burns in the carpet and the shower running, which brings the ceiling down on the apartment below. We’ve all had guests like that, but mine lives in my prostate. He’s a disrupter.

How do my side effects measure up?

If you look at ProstateCancer.net’s survey: Prostate Cancer in America 2018 you’ll find a chart setting out the symptoms and side effects of prostate cancer treatment that affect daily life. How do I measure up?

  • Erectile dysfunction? Yup afraid so.
  • Fatigue? Managed to dodge that bullet.
  • Frequent urination and sudden urge to urinate? Frequent flyer status on that one.
  • Back and hip pain? I got a pass on that one too.

Deciding on hormone and radiation therapy

When I was first diagnosed my wife and I discussed the two available treatment options: Radical prostatectomy or hormone and radiation therapy. I opted for the surgeon’s knife, but it didn’t work out that way. The surgeon took one look at my scans, said the cancer was very close to my bowel and mentioned the possibility of colostomy bags. That didn’t sound too enticing, so Mrs. Preen and I had further discussions and went with the second item on the PC menu: hormone and radiation therapy.

One of the major side effects of hormone therapy, not on the chart, are hot flashes. I guess I get around six or seven a day and sometimes at night which generally wakes me up, but that’s OK as I’m bound to need to pee anyway. I know some people find these flushes really debilitating, but I can live with it. I take it as a reminder that my treatment’s working. The only time I hate breaking into a sweat is at work when I’m presenting to a room full of people. I can see people thinking, is he having a heart attack? as beads of sweat drip from my eyebrows. It’s not a great look.

Weight gain

But nowhere on the list is there mention of a most unlikely side effect: Weight gain. Cancer is effectively a wasting disease and then there’s chemotherapy which makes food taste so vile, the patient stops eating. But of course, unless the cancer has spread, chemo is rarely used to treat prostate cancer.

Throughout my whole life I’ve never had a problem with my weight, staying slim has been easy. Even as I got older and my metabolism slowed I was able to stay trim. If you’re finding this very irritating here’s something to make you feel better; all my hair fell out at 28 and I now wear hearing aids. Aging, it’ll get you one way or another.

Now, thanks to the Zoladex hormones that are jabbed into my abdomen by a spring-loaded instrument of torture every three months, I can’t stop eating. Some switch has been tripped in my brain, I’m now like a sheep, I graze constantly. My weight which has always stood at around 80Kg (176 pounds), started to edge close to 90kg (198 pounds). Something had to be done and I’m now on the 5:2 diet. On Monday and Wednesday, I eat what seems like three sticks of celery and on the other days I eat normally, or these days slightly abnormally. I’m hopeless at counting calories and restricting what I eat, so going cold turkey works for me. I’m now down to 84kg.

Settling into my new routine

When I first learned I had prostate cancer, a doctor friend said whatever you do, stay healthy. Keeping my weight down and going to the gym are my ways of encouraging the Unwelcome Guest to check out as soon as he likes. And let me tell you this, breakfast sure tastes good on the day after the diet.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Baldybell
    2 months ago

    You’re absolutely right! God bless you!

  • Baldybell
    2 months ago

    Hey, just wanted to let you know my psa is still undetectable. I can breathe again. Lol. Thanks for asking. Best of luck to you.

  • ninaw moderator
    2 months ago

    @Baldybell, I’m glad you checked back and extremely glad to hear your PSA is still undetectable! We often see that you don’t realize how much it’s affecting you until it’s over. Until the next one of course, but now you deserve to celebrate.
    – Nina, ProstateCancer.net Team

  • kenneth1955
    2 months ago

    Hello Jim…I just read your post. I need to ask you some questions. I hope you don’t mind. Why did you only look at the two options. Radical Prostatectomy and Hormone & Radiation. Did you not get a second opinion. Both have a lot of side effects even if you could not do the Radical. Why pick the other radiation is know for sexual problems Would you not concerned with that problem or did you just want the cancer gone. We are all different and I for one would not have anything don’t that would mess up my sex life. I don’t can how old I am. Also was your cancer slow growing did they find that out. Thank you

  • Jim Preen moderator author
    2 months ago

    Kenneth Thanks for your note and I’m sorry for my slow reply. Those were the two options offered by the NHS (UK National Health Service). I also looked at Hi Fu, but the doc said it wasn’t right for me. I went with radiation and hormone as the cancer, which was fast, was near my bowel and the surgeon didn’t like the look of it. All the best to you. Jim

  • stevecaks
    2 months ago

    I’m a dedicated walker. Some days 10 miles or more, other days not near that. While I’m out I talk to neighbors and have made quite a few friends that way. Some know of my diagnosis, and ask how I am (and are serious). I am still getting a Lupron shot every 3 months. I’m due next week. PSA has been zero since Lupron started.

  • Jim Preen moderator author
    2 months ago

    Yes I walk a lot too. I have a dog (Rusty) who insists on it. All part of keeping healthy. Rusty helps me to make friends too!

  • ninaw moderator
    2 months ago

    That sounds like a great habit, @stevecaks – and I appreciate what you say about the value of building those friendships. It’s important to have folks nearby that truly care about you and not just for a surface level chat. I can see that with your other conditions and still on Lupron, some symptoms might be inevitable. Your mention of your neighbors reminded me of Will’s article on how talking about his mental and physical health have helped: https://prostatecancer.net/living/talk-helps/.

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • stevecaks
    2 months ago

    I am 72 years old and in my 13th year of retirement. I was a truck driver for 30 years. I’m also a Vietnam veteran.

    My case is a lot like Jim’s. Steadily rising PSA, which indicated biopsy—Gleason score of 8. Prostatectomy was first choice. I actually was in the OR and went under thinking it would be done, The urologist went in, but I was awakened and told i still had my prostate. All I got were robot scars. To attempt removal probably would’ve caused colon damage.

    Next treatment was hormone depletion. (urologist called it “chemical castration!” Good doctor, poor bedside manner) and radiation. I’ve been on Lupron for about a year. Radiation was 44 sessions, five days a week for nine weeks. Last sessions was about a year ago. Side effects were bowel and bladder incontinence and being very tired. Incontinence is well-controlled, but still get tired.

    I was being treated for ED before the cancer diagnosis. I have been type 2 diabetic for over 10 years, and I’m also a longtime user of antidepressants—both erection killers. I slowly saw my abilities fade. By now, physical lovemaking has disappeared from our marriage, but the relationship has endured. It’s good to have an understanding wife!

  • Jim Preen moderator author
    2 months ago

    Steve Thanks for your note and I apologise for taking so long to get back to you. Your circumstance does sound similar to mine. That must have been a shock when you woke up after the operation that never happened. Cancer; you never know what it’s going to chuck at you. I seem to have avoided the tiredness side-effect, but my goodness the doc calling it chemical castration, that can really ruin your day! It’s sounds like you’re staying positive, so good luck and I wish you all the best. Jim

  • ninaw moderator
    2 months ago

    @stevecaks, welcome to the ProstateCancer.net community, I don’t think we’ve heard from you before? I’m sorry to hear you’ve been down this road, but glad you’ve found some things in common with Jim. Is your PSA down to undetectable? Have you been able to do any exercise, even as simple as long walks? It’s one of the first things a lot of guys here mention when dealing with both physical and mental symptoms/side effects.

    I appreciate what you say about your wife – it makes a huge difference to have that kind of support, especially when a big part of your life fades away. Dr. Nick talked about this in many of his articles. Sharing some here: https://prostatecancer.net/living/selfless-sex/.

    Thanks for commenting and don’t hesitate to stop by anytime.

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • Jeffrey Leon
    2 months ago

    3 1/2 years in. Brachytherapy radiation and hormones for all the same reasons. Hot flashes can take me out of the game at anytime. Now I’m dealing with bone pain. It recently metastasized to my bones in a few spots. Still one month to my 3 month appointment and struggling. Not doing well this round. Probably gonna change from Xtandi and elegard to Zytiga, prednisone and elegard. Been on a leafy green diet trying to trim off some weight I’ve gained before steroids.its getting real now!

  • Jim Preen moderator author
    2 months ago

    Hey Jeffrey. I hear you, it can be tough. At one point I though my side-effects were having side-effects. Having been on vacation I’ve piled on the pounds so it’s back to the diet on Monday. Stay strong and good luck. Jim

  • ninaw moderator
    2 months ago

    We hear about this a lot with mets, @jeffrey-leon, one minute being on an upswing and feeling good, the next dealing with a lot of side effects. There do seem to be many more options of drug combos now than there were before, so hopefully another will work better for you. Have you noticed any changes in energy or weight since the diet change? Wishing you well!
    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • rlyons
    2 months ago

    I had hot flashes every 20 minutes right on time. My doctor put me on Megace and the hot flashes are gone. I have every other side effect but at least that one is gone.

  • Jim Preen moderator author
    2 months ago

    That’s interesting. I’ll ask my doc about Megace, not heard that name before. Do you get tired a lot? That’s one I’ve managed to dodge. All the best to you. Jim

  • Hammerdwn
    2 months ago

    Thank you Rlyons for your post. After long time use of venlafaxine for my hot flashes, it no longer worked after it was necessary for me to start Zytiga, prednisone and a clinical trial drug. I am now on megase and have yet to see much help from it for my hot flashes but I do find that I become irrationally emotional a bit. I have been on megase for only less than a month so I am hoping for better things from it in the future.

  • Dmadi61
    2 months ago

    Hey Jim. I am in the same boat as you. I had high dose brachytherapy and external beam therapy evryday for 5 weeks – all while enjoying the side effects of Hormone Deprivation Therapy. I was having hot flashes as well. My Doctor put me on a lose does of Paxil. I did not want to take it but it really does help. No flashes at night. Maybe one flash per day – but not intense at all. Ask your Doctor. Maybe it will help. I have been on Hormone Deprivation for 14 months. Ten months to go.

  • Jim Preen moderator author
    2 months ago

    Hey there. Never heard of Paxil. Will certainly ask my Onco about it. Hot flashes are really unwelcome when I’m at work. I’ve been on Hormone therapy for nearly two years with one year to go. Oh joy! All the best and let’s beat this damn thing. Jim

  • Baldybell
    2 months ago

    My hot flashes were terrible when I started lupron so I talked to my Urologist. He put me on Medroxypr, that’s what is on the prescription bottle but I’m pretty sure it’s called Medroxyprogestorone. It has stopped all got flashes. You could talk to you Dr about it. Good luck! My Gleason scores were 4+3, 4+4, and 4+5. Had radiation and lupron. Since then my psa has been undetectable. 1 1/2 years. Get my blood drawn Friday & see my results next Friday.

  • Jim Preen moderator author
    2 months ago

    Hey BB Sorry for my slow reply. What was your PSA score, if you don’t mind telling us? I hope it was good news. Medroxypr – another name I don’t know. My next one is in September. All the best and good luck. Jim

  • ninaw moderator
    2 months ago

    @Baldybell, I hope you’ll let us know how the results go this Friday. Very glad you have relief from the hot flashes – definitely something to bring up to the doc if they’re getting in the way of things, which they usually do! Hoping for undetectable PSA.

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • Chuckcole
    2 months ago

    To the unwelcome guest and to the people who call him the unwelcome guest. Is anybody stopped sat him down and talk about his feelings this sounds like it could be a physical and emotional trauma which I did write about some time ago in an article. Physical side can come from the aches and pains the headaches. Pains comes from the feet when you start to lose it will you can’t walk anymore. The emotional side is the big one that’s the one that nobody really looks at again another article I wrote it at prostate cancer. Net that nobody seems to read. Emotional side of having cancer is probably the worst any man could ever have because your entire fusion of what makes you up is in there are nights when I go to bed and I look at my wife thinking why do you still love me for I feel like I don’t feel like a man to you anymore I don’t feel like much I can’t help you take the trash out I can’t help you vacuum because I can’t lift anything because of my back can’t even make love to you cuz it hurts my back.don’t you think the emotional side takes a lot out of someone sure does. Unwelcome guest needs to have someone sit with him and discuss is emotional his physical problems that he is experiencing nobody ever looks at this stuff it’s like I said it’s at least emotional nobody looks edit people look at your crazy they think because you’ve got cancer it feels like you got some kind of leprosy that nobody wants to get there you and I are no different than anybody else out there unwelcome guest believe you me there was no one else out there better than you and me we are on our own and there’s a lot of other men crying for that same attention and if this is the only way for them to get attention good because it’s about time somebody pays attention to us nevermind all don’t worry it’s going to go away it is not a cold. What we have is not a cold we have a dreaded disease that stem robbing us of our very presence of everyday life. I’m going to charge you that you’re going to go put your arm around that unwelcome guests and you’re going to talk to him and you are talk to him like a normal human being and talk to you and find out what’s wrong he will open up to you once you trust you but that’s the main thing you got to get the person to trust you and then life will be good. Remember then we will overcome this I’ve been at this for almost 4 years and I’m still alive after 5 surgeries after 5 different meds I’ve had excessive pulmonary embolism and I’m still here and if I can be here you can be here so I want somebody to put their arm around that man and I want to end assembly to assure him that life is not over yet life is just beginning God bless everybody Chuck Cole

  • Jim Preen moderator author
    2 months ago

    Hey Chuck (@Chuckcole) Thanks for your note and apologies for the slow response. Yeah talking to the Unwelcome Guest, I guess we all do it at some point. But the Guest is so useless, because if he destroys us then he destroys himself. No wonder he has so few friends!
    And you’re absolutely spot on, the damn guest can really sap your confidence, it’s tough to stay upbeat some days, but we all have to try. But my word you sure have been forced to take a tough road, 5 surgeries. Sending you all the best wishes I can muster from London. Jim

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