Any younger men post rectal surgery?

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ATCZero
Posts: 2
Joined: Sun Jan 27, 2019 8:42 am

Any younger men post rectal surgery?

Postby ATCZero » Sun Jan 27, 2019 10:50 pm

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!

del
Posts: 111
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Any younger men post rectal surgery?

Postby del » Mon Jan 28, 2019 5:52 am

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.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Any younger men post rectal surgery?

Postby Pyro » Mon Jan 28, 2019 2:06 pm

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
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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muskokamike
Posts: 224
Joined: Tue Feb 25, 2014 4:38 pm

Re: Any younger men post rectal surgery?

Postby muskokamike » Mon Jan 28, 2019 2:19 pm

I hope it all works out for you.
Last edited by muskokamike on Mon Jan 28, 2019 3:52 pm, edited 1 time in total.
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

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Maggie Nell
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Location: Melbourne, Australia

Re: Any younger men post rectal surgery?

Postby Maggie Nell » Mon Jan 28, 2019 3:19 pm

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.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

sbpaq1
Posts: 10
Joined: Sat Aug 25, 2018 8:09 pm
Facebook Username: Matthew

Re: Any younger men post rectal surgery?

Postby sbpaq1 » Mon Jan 28, 2019 6:01 pm

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.
Age 30, Male
07/05/18 - Colonoscopy, T3N2M0/Stage IIIB Rectal, MSS and High Grade
09/10/18 - 28 Days Xeloda/Radiation
10/11/18 - MRI decrease in Tumor & Nodes
11/19/18 - lAR
12/06/18 - Bad news, Surgery margins inconclusive, 17 of 19 nodes, PNI & LVI
12/09/18 - Bad news, 2 spots on liver and 1 on Lung, XELOX start
02/15/19 - Good News! Lung spot gone, Liver Spot down to 1, Nodes shrinking.
06/15/19 - bad news! Rectal recurrence and node increase
07/01/19 - folfiri
08/23/19 - surgery consult unc

kiwiinoz
Posts: 1134
Joined: Thu Jan 03, 2013 11:44 pm

Re: Any younger men post rectal surgery?

Postby kiwiinoz » Mon Jan 28, 2019 8:17 pm

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?
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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John72
Posts: 338
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Any younger men post rectal surgery?

Postby John72 » Wed Jan 30, 2019 11:21 am

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.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

ATCZero
Posts: 2
Joined: Sun Jan 27, 2019 8:42 am

Re: Any younger men post rectal surgery?

Postby ATCZero » Thu Feb 07, 2019 2:29 am

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.

Ehut
Posts: 218
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Any younger men post rectal surgery?

Postby Ehut » Thu Feb 07, 2019 10:22 pm

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.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

del
Posts: 111
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Any younger men post rectal surgery?

Postby del » Thu Feb 07, 2019 10:56 pm

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.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Any younger men post rectal surgery?

Postby hiker » Fri Feb 08, 2019 8:26 am

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
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

mandosquiddy
Posts: 34
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Any younger men post rectal surgery?

Postby mandosquiddy » Fri Feb 08, 2019 10:36 am

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.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal
12/19 CEA 1.3!!!!

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Any younger men post rectal surgery?

Postby Maggie Nell » Fri Feb 08, 2019 6:45 pm

Jaysus, if there's no sex in the afterlife; I'm not going!!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh


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