My Journey with Prostate cancer

By Perlongotom

1 min read

Hi. My name is Tom. I am 53 years old and here is my story. In April or 2021 I was diagnosed after a biopsy of prostate cancer. It was a high grade so, I had to have a prostatectomy. The prostate was removed as well as a rather large cancerous tumor. Two weeks after that surgery, I had to have drains surgically implanted to drain fluid from my lymph nodes.

How long does the ED last after the prostate is removed? I can't imagine not ever having sex again. This is very frustrating and heart breaking for both my and my wife. Any suggestions are welcome.

Thanks!

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Will Jones Moderator
<inline-mention username="Perlongotom" user-id="4229181"/> I had surgery over three years ago when I was 69. While ED is still an issue for me, my wife and I still enjoy a mutually satisfactory intimate relationship. Here's a link to an article I wrote for <a href='http://PC.net' target='_blank' rel='noopener noreferrer ugc'>PC.net</a> not long after my treatment that details my experience. <a href='https://prostatecancer.net/living/dealing-dysfunction' target='_blank'>https://prostatecancer.net/living/dealing-dysfunction</a>
Perlongotom Member
<inline-mention username="Will Jones" user-id="3272209"/> thank you for posting your article. It's good to know that I'm not alone. I'm 4 months into recovery and still no improvement with ED. Viagra does not work but, I am looking into Trimix injections. They are expensive but, if my HSA will cover the cost I will definitely give that option a try. God bless you and stay positive! Tom Perlongo
Will Jones Moderator
 Good luck, Tom. I hope the treatment works for you.
marcus Member
This is a very traumatic experience for me. Next week is my third visit with my urologist following surgery in January. Urinary Incontinence has improved considerably over the 9 months but sadly my sexual activity is zero! My wife and I have tried to have sex but the erection is not firm enough for penetration! Strangely though during fore play I literally squirt large amounts of urine unknowingly! It’s very embarrassing to say the least and I’m rather discouraged to engage in any sexual activity which is unfortunate! Any help on how to deal with this?
1. SamuelTaylor Community Admin
 We appreciate your openness to share, Marcus. It's great that your urination has improved since the surgery. It might be that your erectile function will improve with practice and time as well. It's understandable to be discouraged or embarrassed, however many other men experience this too after surgery. Hopefully, others in the community will chime in with some more advice. Please keep us posted on how you're doing. -Samuel, Team Member 
2. Richard Faust Community Admin
 Hi <inline-mention username="marcus" user-id="3266285"/>. Know that you are not alone in struggling with some erectile issues for a while after a prostatectomy. I want to share with you this article from one of our experts discussing various options for treating ED: <a href='https://prostatecancer.net/living/erectile-dysfunction-now-what' target='_blank'>https://prostatecancer.net/living/erectile-dysfunction-now-what</a>. Don't hesitate to discuss the various options with your urologist and your concerns about the urine (note: there are others who have definitely noted and dealt with this issue as well). It is understandable that it is difficult be patient, but hopefully working on a plan to move forward will help. Please feel free, if you like, to keep us posted on how you are doing. Best, Richard (ProstateCancer.net Team)
July4boomer Member
Tom- I am sad to read your story as a brand new member of this community forum. I was diagnosed with stage 4 hodgkin's lymphoma early 2019 and have been receiving chemotherapy heretofore, almost 3 years. Today I learned my PSA is 14.1 and facing a needle biopsy. I have a strong family history of PC. I don't have an answer to your question, but hope someone will respond with a helpful answer and advice. I am 66 and know how you feel, for sure. Best of luck and health.
1. Perlongotom Member
 <inline-mention username="July4boomer" user-id="4262802"/> this is very sad to hear. Keep up a good fight buddy. The only real issue that I have now after 5 months from my radical prostatectomy is that I still am unable to achieve an erection. I pray every night that it comes back. 
2. SamuelTaylor Community Admin
 We appreciate you sharing your own experience, July4boomer. Wishing you nothing but support and connection here in the community. Please feel free to reach out anytime. -Samuel, Team Member
July4boomer Member
I appreciate your warm words. I am trying to populate my photo from my gallery on the Samsung galaxy phone, but the image is upside down! Oh well. Regarding ED, there are numerous treatments available. Perhaps paradoxically, my Urologist is also a specialist in ED treatment. I know how frustrating it is, at age 66. Don't give up!
dele0527 Member
Hi Tom, Sex can take many forms, and having a radical, your probability of having physical intimacy in the form that we normally think of as sex is probably not ever going to be achievable again. However, there are many alternatives that can provide the satisfaction of a very intimate relationship. This discussion from penal implants to external aids should be had with your doctors. The physical healing process will take time, but the mental concerns are what is important. The emotional compatibility and the attention to your partner who is going through this journey with you are extremely important. In time these items of importance can be satisfied for the both of you, giving you a full physical pleasurable experience. Seek out the advice of trained professionals and follow their guidance, try various routes till you find one that meets the requirements that works for both of you. Be well and stay safe
danny115 Member
I tried everything after my surgery, pumps, pills, injections- nothing worked. My surgeon told me I'd have erections and orgasms' soon after the operation. I am here now 4 years later and still no erections or orgasms and my marriage is starting to fall apart as my wife is now accusing me of lying about being able to have sex again.
1. mikeday62 Member
 Danny, afterthought on my comment. Are you sure you were injecting properly? There are a lot of instructions you can find. The med needs to get to the right place. I also use a restricting ring and/or squeeze the base of the penis for 5-10 minutes after injection to make sure the med stays in the penis and I have read that many do that.
mikeday62 Member
Tom, as my surgeon told me a few times before it really sunk in everyone is different and that seems very true. He expected from his experience that my erections would recover in the second month after surgery and that didn't happen. Injections are the only thing that has worked and I'm am managing well with that. It's been 9 months now and I am still hoping things will change. The cost of injections can vary depending on how much you need. A low dose works for me so the trimix was less than $2 per dose. Trix gave me pain so I switched to Bimix which works out to cost more but not by a lot. From the few I different meds I tried it seems like the price does not change much for the different strengths so you might talk to your doctor about a stronger mix with lower dose if cost is and issue. Don't give up. Marcus, I did have that experience of a little urine coming out during sex. I make sure to empty my bladder as much as possible before and that is working for me, but my surgery was very successful in the bladder department. Kegel exercises may also help. Danny, from what I have read the injections should work no matter what the ED issue is. There are three different drugs used. Trimix has three, Bmix two and one used alone and they all come in different strengths. If you have not already, try different ones. My doctor was very good about the options and worked with me to get it right. If your doctor does not you might want to try another doctor. https://www.franktalk.org is a very good site for ED info
danny115 Member
I tried both and both caused me to suffer a painfully curved penis. I actually had to go to emergency with an ice pack on my groin after one injection. 
1. Dennis E. Golden Moderator & Contributor
 danny 115 ... Just an FYI .... Peyronie’s disease ( a curve in the penis) can be the result of scar tissue build up in the penis that results in bends, curves, and a loss of length and <a href='http://girth.The' target='_blank' rel='noopener noreferrer ugc'>girth.The</a> condition can be the result of an injury or after surgery. Based on conversations with men in our support group and urologists, the BEST course is to find a expert who is VERY skilled at treating that specific condition. Not all curves are indications of the disease so ... best to do some investigating. ... Dennis(ProstateCancer.net TEAM)
Staylor Member
Thanks guys, this helps. I had surgery in October 2020 by someone who was considered to be the best in my state, but he left some stuff, and my oncologist immediately put me on Lupron which sent my PSA to 0.061. The surgery, I'm guessing, did some nerve and vessel damage, along with seven weeks of radiation, that has estranged me from my friend, my penis. Aside from the frustration, relative unknowns, and varying answers, I am grieving the loss of my buddy, and the shrinking of his companions. I considered gathering my friends, who have all heard way too much about my guys, and having a commemorative service that would help in my grieving. As you may have noticed, my best way of dealing with this is humor, but I really want my "manhood" back. Do any of you feel a need for a grieving process for your loss? I think that would help me to know you may share my grief.
1. SamuelTaylor Community Admin
 We appreciate you sharing your grieving process, <inline-mention username="Staylor" user-id="4262447"/>. Other's certainly have shared this experience of losing some of their "manhood" however there are also many examples of therapies and procedures to regain some of the functioning that has been lost from treatment. Have you looked into any physical therapies for addressing the complications? -Samuel, Team Member
Staylor Member
Thanks Samuel ~ yes, I'm back into that process now, but aside from injections and implants, it might just be a waiting process. I was mostly interested in the psychological effect of this on other guys. I live alone and haven't had a sex partner anyway for a while, but the loss was an unexpected identity surprise. 
1. SamuelTaylor Community Admin
 We hear you, <inline-mention username="Staylor" user-id="4262447"/>. It can be an identity shift to experience this sort of loss, for sure. Please feel free to continue asking questions within the community, I know that other's resonate with you. -Samuel, Team Member

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