The Colon Club

First post here, I was just diagnosed with stage 1 (T2N0M0) in December, at least according to the MRI/CAT, right above the rectal verge, with another very "aggressive" polyp in the transverse that they couldn't connect with genetic testing. I say all of that since I don't have a signature (or know all the acronyms for this forum) just yet.

My question: I'm scheduled for robotic surgery at the Mayo clinic on the 6th of February. My biggest concern going in was the colostomy, but that pales in comparison to what I've read about sexual dysfunction over the last few days. I'm an active, single 35 year old man. Proper sexual function is probably the most important part of my life - so much that I've considered it might be more important than living longer without it. I denied neoadjuvent chemotherapy as all studies pointed towards surgery being the first treatment for my stage. Now I'm even more terrified at the potential outcome.

Have any men diagnosed under age fifty had this type of surgery? Did you encounter any problems with erections, ejaculation, quality, etc? Did they get better or worse over time? Was medication a resolution?

I'm losing a lot of sleep over this, and I've scoured the internet for any sort of input on the outcome... it ranges from 15-75%, and the data is vague, usually sampled from age groups that would experience ED without surgery.

Thank you!

15-75% sounds very high. At the time of my surgery, I do recall my surgeon mentioning to me that sexual dysfunction is a fairly low risk. I would suggest you speak to your surgeon and let them know your concerns. I personally didn't have any problems in that regards.

ATCZero wrote:First post here, I was just diagnosed with stage 1 (T2N0M0) in December, at least according to the MRI/CAT, right above the rectal verge, with another very "aggressive" polyp in the transverse that they couldn't connect with genetic testing. I say all of that since I don't have a signature (or know all the acronyms for this forum) just yet.

My question: I'm scheduled for robotic surgery at the Mayo clinic on the 6th of February. My biggest concern going in was the colostomy, but that pales in comparison to what I've read about sexual dysfunction over the last few days. I'm an active, single 35 year old man. Proper sexual function is probably the most important part of my life - so much that I've considered it might be more important than living longer without it. I denied neoadjuvent chemotherapy as all studies pointed towards surgery being the first treatment for my stage. Now I'm even more terrified at the potential outcome.

Have any men diagnosed under age fifty had this type of surgery? Did you encounter any problems with erections, ejaculation, quality, etc? Did they get better or worse over time? Was medication a resolution?

I'm losing a lot of sleep over this, and I've scoured the internet for any sort of input on the outcome... it ranges from 15-75%, and the data is vague, usually sampled from age groups that would experience ED without surgery.

Thank you!

Sex? I'd Say your priorities off. My body "parts" do not work after my colon surgery,
Everyone is different, and I was 38

I hope it all works out for you.

Be nice guys.

Just about every newbie to this forum has scared the crap out themselves reading horror
stories elsewhere and why shouldn't retaining quality of sexual functioning be a legitimate concern?

I am sure there are many blokes who do have positive outcomes but they're not tooting their
horn about it on the internet!

Wishing you no issues below the belt, ATCZero. If you do, may you have creative and understanding
partners to help you explore new sensations.

Heya,

I’m 31 and had lar surgery with a temp ileostomy on 11/19 and on 11/20 I woke up to that all familiar feeling a lot of guys get in the morning. Unfortunately with a catheter in it’s actually slightly painful.

After being discharged everything works just fine in terms of arousal, stiffness and time to completion. The one thing that doesn’t, and I’m not trying to scare you, is the “amount” produced. Keep in mind I had radiation period, something you did not. It has been coming back over the past two months but is still a ways below where it was.

Given your stage, age and social status it’s normal to be less focused on the main issue and more on the side effects but I was a different story, t3n2bmo(at resection) so I was able to focus on the living part being the biggest issue. You are at a great hospital, hopefully have a great surgeon and your downstairs will most likely be just fine.

I'd just think of the bigger picture. It would be nice to have a great libido, but hard to use it if you are not able to address the cancer. Stage I sounds great, but what about the cancer in your transverse.
Deal with that as you are.
I had a LAR in Jan 2012 and then VATS (lung resection) in FEB 2013. I was fortunate that I had a "flexible colon" so came out from LAR with no colostomy but I was prepared for it in every way and was surprised, pleasantly, but still surprised to not have one. Then after the two operations I underwent FOLFOX (a form a chemotherapy) for 6 months. I'll be honest and I was emotionally wanting to connect with my wife, but it took me a good 6 weeks after the VATS to even be able to consider it physically.
I am here 6 years or so later and I still can perform as I did prior to cancer.
I was told the risk of sexual disfunction was about 10% and my cancer was about 12cm from the anal verge. I am surprised to hear that your percentage is so high. Is your surgeon a general surgeon or someone that specializes in colorectal cancers?

Hi, I had surgery at 37 for rectal cancer.

For the first nearly a year, sex wasn’t really a thought. I had a colostomy bag and was single and wasn’t trying to have to explain that to a woman I didn’t have a relationship with.

After reversal, levitra works just fine. I’m sure viagra and cialis do also.

Although the replies aren't exactly what I had hoped for, there is some hope.

I backed out of surgery, instead I'm starting neoadjuvant FOLFOX next week (12 Feb 2018). I couldn't deal with the risks just yet, as I consider that equivalent to a death sentence.

While the surgeon considered this "standard of care," they'll still apparently want surgery even in the off chance that the tumor completely responds. I guess I'll cross that bridge when I'm forced to.

While I appreciate all the input, to me, personally, a life without sexual function isn't a life worth living. We all have our priorities.

Just so you are aware, Oxaliplatin (the "OX" in FOLFOX) destroys the germ line cells in testicles and will likely cause infertility at least temporarily. In my case it lasted over 2 years before coming back.

I was treated at Mayo in Rochester with radiation and surgery (chemo was done closer to home) and have more or less "full function". I sometimes wonder if chemo causes more damage than surgery.

Have you discussed the possibility of a transanal excision with your surgeon? It's a much less invasive surgery that is sometimes offered to stage 1 patients, where only the tumor and some surrounding tissue are removed.

ATCZero wrote:Although the replies aren't exactly what I had hoped for, there is some hope.

I backed out of surgery, instead I'm starting neoadjuvant FOLFOX next week (12 Feb 2018). I couldn't deal with the risks just yet, as I consider that equivalent to a death sentence.

While the surgeon considered this "standard of care," they'll still apparently want surgery even in the off chance that the tumor completely responds. I guess I'll cross that bridge when I'm forced to.

While I appreciate all the input, to me, personally, a life without sexual function isn't a life worth living. We all have our priorities.

ATCZero,

I'm a 51YO man (49 when diagnosed so a bit older than you) married to a beautiful woman. Fun in the bedroom (well, anywhere really) has always been high on my list of necessities - much like air, water, food. However, when cancer came knocking there were more important issues than whether or not I could perform in that way. My wife would much rather have me here completely impotent than to bury me. I would much rather be here completely impotent than to not be here. Sounds like you've decided what's most important to you since you're forgoing surgery.

Chemo may or may not get rid of the cancer - surgery will without a doubt get rid of it. If you don't get rid of it completely, then it could be spreading while you're on the chemo. Right now you're stage 1. If the cancer progresses, you could get to where I am - stage 4. And I'm here to tell you, it's no fun ride.

I've had a robotic colon resection, a wide open liver resection with HAI pump implant, 14 rds of systemic chemo, and 5 rds of HAI pump chemo. If my cancer comes back and I was told I could do either chemo or surgery to get rid of it, I'd pick surgery without even thinking about it. Until you've had that poison pumped through your body, you have no clue what you're in for - it's the worst thing I've ever subjected myself to.

If you have a good surgeon, your sex life should be fine. I'm talking from experience. Within 2 hours of being released from the hospital from my colon resection, me and the wife were back at it.

I wish you well.

hiker

I will say that all my treatments and surgeries has impacted my sex life but not my ability to have one. Once I started chemo and had surgeries the desire just dropped off for me. The main issue is just being way more tired than I use to. It has recovered somewhat but I'm still dealing with some impacts. Honestly I feel worse for my wife than I do for myself. However, she would rather have me alive. You won't be having any sex if you are dead.

Jaysus, if there's no sex in the afterlife; I'm not going!!