Community Views: The Hardest Part of Prostate Cancer

2 min read

Last updated: June 2024

About 1 out of every 8 men will be diagnosed with prostate cancer. This disease affects many each year, but nobody is alone in this ongoing fight.¹

To learn more about how our community members are coping, we reached out to followers of our Facebook page. We asked them to complete the sentence: “The hardest thing about living with prostate cancer is ___________.”

Nearly 30 community members shared, and here is what was said:

Fear of recurrence

The most common answer was that the hardest part is the fear of prostate cancer coming back. This makes sense. Anyone who has prostate cancer has already had a scare and may feel like they can no longer trust their body.

A little fear is healthy. It will likely inspire you to monitor your health and see your doctor for follow-up visits. However, keep in mind that prostate cancer tends to grow slowly. Plus, you and your doctor can now stay on top of getting your PSA levels checked. If you can, spend some free time meditating or enjoying a hobby to give your mind a break from worrying.

“Fear of recurrence.”

“The never-ending fear of recurrence, even after prostatectomy.”

The what-ifs

It is incredibly easy for the human mind to worry about worst-case scenarios. However, worry does not help anything, especially a medical condition. We often think that worrying about the future helps us stay in control and figure out what we may need to do. But the truth is that none of us knows what will happen when.

Worrying only causes stress, along with things like elevated heart rates and feelings of nausea. If you catch yourself worrying, a trick is to remind yourself that right now, at this moment, you are OK and healthy. You have everything you need. Repeat as needed.

“The what-ifs slowly eat you alive. You wait for bad news, all the time.”

“Waiting for the other shoe to drop!”

“The unknown.”

“Not knowing what is going to happen or when.”

Lifestyle changes

Surgery, radiation, or watchful waiting – all treatments for prostate cancer will have an impact on your sex life. This looks different for everyone but may include things like a low sex drive or dry orgasms. The good news is that these symptoms can be managed. Yes, life is different, but for many men, there is a path back to a full and healthy sex life after treatment.

All of the above

A few community members shared that there are no easy parts of this journey. The worry, the treatments, and the after-effects all take their toll. However, many community members also shared that their cancer responded to treatment and is in remission. No matter where you are in your journey, there is always hope ahead.

“I have yet to find anything easy in this fight.”

Thank you to everyone who shared so openly about their experiences with prostate cancer. We are grateful that this community is a safe space for people to share their concerns and find strength and support.

Join the conversation

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Will Jones Moderator
I appreciate the lifestyle changes point of view. It is not the same for everyone, and the challenge is to adjust to whatever reality exists after treatment. With a willing partner, these changes can lead to new levels of intimacy not previously experienced. 
1. CommunityMember470bd5 Member
 Nobody ever speaks about if you do not have a willing partner and are very alone.
2. JillBrodie Community Admin
 Hi <inline-mention username="CommunityMember470bd5" user-id="3258566"/> I really wish you had more support. My heart breaks for you. We are here for you whenever you need and there are in person support groups if you were interested, you can find a local group on <a href='https://www.cancer.org/' target='_blank' rel='noopener noreferrer ugc'>https://www.cancer.org/</a>. Sending you lots of support. Jill, <a href='https://prostatecancer.net' target='_blank'>prostatecancer.net</a> team
Dennis E. Golden Moderator & Contributor
 The BIG Concerns - Fear of Recurrence ... Yup - Loss of Sexual Function ... Yup - Not the Man I Use to Be ... Yup - Financial or Job Loss ... Yup - Loss of Sex Drive ... Yup - Fear of Death ... Yup While the above are often seen as the top concerns, the one concern Medical professionals and patients overlook and downplay is the post traumatic stress disorder (PTSD) that can develop anywhere along the way – from the time of an initial diagnosis, to treatment, to remission, to being on active surveillance. Like it or not Prostate Cancer (PCa) is much more than a physical disease. The many stresses associated with PCa can camp out in the back of your head and play havoc with your attitudes, career and relationships. It can stay hidden as a repressed fear or it can flare up in fits of rage and anger or depression And because men will always be men we tend to go all macho and tough it out. Is now not the right time to stop the nonsense? Is now not the right time to reach out and admit we may need a bit of support in this battle? Patients and the medical professionals need to put more focus on the deep impacts this disease has on men and we all need look for ways to engage men on a deeper and more meaningful level. ... Dennis(ProstateCancer.net TEAM)
Guy Meredith Moderator & Contributor
The medical community in general fails to look at the whole patient and what is happening to that person after or between treatments. It is a situation of most medical providers not knowing what they don't know. Dr. Richard Wassersug is a cancer patient and, I believe, on lifetime ADT. He and his associates study the patient rather than the disease, the emotional and relationship issues. They have published the book "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" that does a good job of addressing these issues. Dr. Wassersug's book is written in a workbook format to focus on various issues and provide men with prostate cancer and their loved ones a way to create workable solutions that fit them. The book is currently being used to roll out prostate cancer patient support in Canada and a new edition is due out this month to roll out a similar program in the European Union. Guy B. Meredith, moderator.
1. Dennis E. Golden Moderator & Contributor
 <inline-mention username="Guy Meredith" user-id="3261432"/> Thank you for sharing the information on Dr Wasersug's book. Do you know if it is available in the States at this time? . A workbook format makes a lot of sense as it helps everyone focus on the information during what is understandable a stress filled time with emotions running on high. 
2. Guy Meredith Moderator & Contributor
 <inline-mention username="Dennis Golden" user-id="3259730"/> I have contacted the publisher of the newest book, but have not had a response on that edition. It is supposed to be out this month and I am eager to look at the expanded sections. I have been communicating with Dr. Wassersug and an associate to ask various questions and to contribute my experiences in studies he has done on men's sexual health. If you wish to contact Dr. Wassersug let me know. I prefer not post his address here lest it opens up a flood gate of queries. Guy B. Meredith, moderator.
jb888 Member
just fond that i have a 150 gram prostate with caner on one side just had a M R I waiting to see doctor
danny115 Member
"Yes, life is different, but for many men, there is a path back to a full and healthy sex life after treatment" Absolute nonsense. I'm going on 5 years since RP surgery. 5 years with no ejaculations, no erection, no orgasm, severe incontinence and a wrecked, sexless marriage so don't lie to people and give them false hope, it just make the situation worse.
1. Jim Early Moderator & Contributor
 <inline-mention username="danny115" user-id="3257355"/> I have the had the rare privilege of facilitating a group of men with prostate cancer. I have heard every take on life with this disease. Where there is life there IS hope. The worst days come and go for me too. But, even facing a recurrence, the further loss of my sexual functioning and the need to reevaluate the delicate balance of my relationship I refuse to see life through a totally dark lens. We're all in this together and there are ways to deal with at least some of our frustrations. The recent mid-year conference of the Prostate Cancer Research Institute (<a href='https://PCRI.org' target='_blank' rel='noopener noreferrer ugc'>PCRI.org</a>) has a terrific section on incontinence and some of the ways to improve or correct it. If I sound like Pollyanna, it is because my life is generally better when I conjure-up hope. Even if it is often hope unfulfilled....it is still hope! Jim Early---moderator
TomMaloney Member
I have terminal prostate cancer. For me the hardest part is what it is doing to my wife.
CommunityMemberce635e Member
I'm Stage 4 but it's currently well controlled. The loss of sexual function is an occasional thought, but fear of the medications losing effectiveness and the loss of strength, muscularity and fatigue are my biggest concerns. It's tough for someone that has been strong, robust, active and strong to experience depression, weakness and inability to do the things that they've done, especially with little hope of regaining our former strengths.