The little stuff (hints and tips): life after surgery

LuckyKYGuy

https://csn.cancer.org/discussion/comment/1726213#Comment_1726213

This. And most likely you’ll notice your penis is smaller. My Dr explained that it’s where the urethra is reattached inside so it pulls the penis inward a little bit. Most every morning now a year and a half later it is like I have excess foreskin and if I don’t forget to pull it back the first time every day I piss all over the place

capecodder

https://csn.cancer.org/discussion/comment/1726212#Comment_1726212

@TurtBean thank you for this info. I will likely have more questions, so appreciate your candid advice based on your experience. How did you choose surgery over radiation? I am still quite undecided even though I scheduled the surgery. I am 66, good health, PSA 2.99, 3+4 with only one core a 4 @10%, decipher 0.54, CHEK2 mutation, father had PCa, been on active surveillance since Dec24. I chose surgery to keep radiation as an option if cancer recurs, which is higher likelihood with family history and Decipher score. Thanks

capecodder

https://csn.cancer.org/discussion/comment/1726214#Comment_1726214

@LuckyKYGuy thanks for sharing. More good news on this journey!

capecodder

https://csn.cancer.org/discussion/comment/1726215#Comment_1726215

@TurtBean i just read your other post where you shared your history and latest update. Thanks

TurtBean

@capecodder - I made my decision based purely on the known and potential side effects to each path.

First, the sheer number of side effects presented for hormone/radiation treatment was compelling. It seemed to be a list that just kept on going - mood swings, increased anxiety, depression, weight gain, loss of muscle mass, increased risk of other cancers, development of breast tissue, shriveling of genitalia, ED, and on and on and on.

Surgery, comparatively, had just a few - the surgery itself, catheter for 8 days, incontinence (that should go away), and ED. About the only things that looked better with the other was no surgery and no incontinence.

Also, I didn’t like the idea of 3+ years of treatment. I’m not paranoid about my cancer, but my personality is to deal with something as soon as and as quickly as possible, and dragging this thing out for that long…not for me.

Finally, as it was presented to me, outcomes were very similar with both, so there was no advantage there. Had they told me my chances of survival were markedly better with the shots…I’d have taken the shots.

For me, it was quick and easy to decide, but at my doc’s suggestion, I took a few days, did some of my own research, and I’m lucky to have two nieces who have careers that tangentially touch on PCa, and I asked both of them to do some research (both have access to university research departments), and to offer their opinions if it were their husbands dealing with this, and they both landed on surgery.

I called my doc back three days later and said, “Get me a spot on the table, surgery it is!”

Please feel free to ask any and all questions - I have no shame and no filter. I just had a lovely conversation with the woman who cuts my hair (she called to check up on me), and we absolutely touched on peeing myself and the rigmarole associated with buying and using a penis pump. Lol

Turt

capecodder

https://csn.cancer.org/discussion/comment/1726219#Comment_1726219

@TurtBean your approach and attitude is refreshing! Thanks for sharing.

Khaffey

Khaffey

Capecodder. First and foremost, whatever treatment you decide, be sure the facility does it all the time. I think you have that on covered. Here's a rundown of how I came to my decision to have surgery. After my MRI, the first consultation I made was with a urologic oncologist / surgeon. First was the trans perrineal biopsy, then PET scan and decipher score. ( Which was 0.80, high risk). He then recommended that I explore all treatment options before making a decision. The only other consultation I did was with the radiology team at NYU Langone Perlmutter Cancer Center, who are the pioneers in Cyborknife treatment for prostate cancer. Cyberknife treatment would involve 2 to three momths of hormome treatment before and 2 to three months after the radiation therapy, which would have been 5 consecutive treatments. I was also experiencing symptoms of an enlarged prostate, which I would still have to deal with after the radiation. After momths of research, I gained alot of knowledge from this discussion board, talking to other men and googleing every question that came into my head. I decided to do the surgery. Once I made my choice, it was like a burden was lifted from my shoulders. As other guys who choose surgery, the main thing is to get the cancer out of your body. The surgery wasn't terrible and dealing with the catheter was the least of it. I came out of surgery with very little incontinence, at 1 year out,it is a non issue. I credit that to the skill of my surgeon and also a procedure called a urethral sling which was done at the same time. I didn't experience any swelling or pain in my testicles or perrineal area. The catheter came out a week later and I was on the road to recovery. Now, at 1 year out, my biggest issue is ED, which is slowly improving. I Don't have to deal with the enlarged prostate. I don't look back, only to the future.

Everyone's case is different, you have to be comfortable with the choice you make and only look forward.

Good luck 👍

capecodder

https://csn.cancer.org/discussion/comment/1726240#Comment_1726240

@Khaffey thank you! Great to hear your thought process and positive outcome from surgery.

Khaffey

Also, If the cancer does reoccur, radiation after surgery is easier than surgery after radiation.

Josephg

@capecodder You are in EXCELLENT hands for whatever decision you make regarding treatment. They've kept me alive with an acceptable quality of life for 13 years and counting.

capecodder

https://csn.cancer.org/discussion/comment/1726250#Comment_1726250

Hi @Josephg. Sounds like you were treated at Dana Farber/MGB? Thanks for the encouragement.

Josephg

https://csn.cancer.org/discussion/comment/1726252#Comment_1726252

That is correct.

Clevelandguy

Hi,

I don’t know if you are aware but there is a newer one incision technique that creates less nerve damage, just need to find an experienced surgeon who has performed this many times.

https://www.yalemedicine.org/conditions/single-port-robot-assisted-radical-prostatectomy

Dave 3+4

capecodder

https://csn.cancer.org/discussion/comment/1726279#Comment_1726279

yes I learned about single port robotic surgery. My doctor, Adam Kibel, only does multi port robotic surgery, and had done thousands of those. For now, I plan to stick with him rather than start over with a new doctor who can do single port, but may ask around the Boston network before final decision. Thanks!