HealingWell
Search Close Search
☰

Exenteration surgery over and Pete is home.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/20/2014 11:10 PM (GMT 0)
Peter's surgery is over and it and went very well, the 12 hour surgery at MSK, the four doctors who did the
bladder removal, colon removal and rectal removal were optimistic that he would heal well. I am so proud of
Pete, he is brave and uncomplaining. The decisions of the past twelve years that brought us to this place is
perhaps a good lesson to all who think that whatever they choose is the best and the easiest way.

No one could ever argue that we didn't honestly think every step of the way that we were doing the right thing. For him to end up with two permanent ostomies is not the worst thing that could ever happen to someone. But, it is funny almost, that we chose in the beginning what would be the very easiest with the least SEs. I just read on a new cancer blog that they are beginning to think that higher doses of radiation for a shorter amount of time would save on money, but they don't say anything about the damage of that Hiroshima effect.

I am confident that we will get through this difficult period and he will get stronger, and we will laugh and travel and drink wine again…but in the meantime, there will be lots of loving men and women who are worried about not having sex again, and will listen to a doctor who will tell them that they can heal with few or no SEs. I am beginning to think that no matter what you choose, you will always be "AS", so why not wait for a few years instead of jumping so fast on low numbers. Di
Posted 3/21/2014 12:13 AM (GMT 0)
Wow, Di, you've been through the mill. I'm not sure there is a take-away here. Someone will be unlucky and get all the SE from a variety of tx.

I'm glad the surgery went well.

Mel

Posted 3/21/2014 2:03 AM (GMT 0)
Please send Peter our best wishes for a quick recovery.

-Gedman
Posted 3/21/2014 2:34 AM (GMT 0)
Thats a tough row, I applaud the spirit that resides in you both.
Posted 3/21/2014 2:38 AM (GMT 0)
Great news Di, glad I got to talk with you both several weeks ago. Upwards and onwards as they say.
Terry
Posted 3/21/2014 3:08 AM (GMT 0)
My best to you and Pete.

Trust me, he is one brave soldier to endure what he just did, and in the future, adjusting to his new "body" and all the severe changes that were done to it.

Without his bladder, did they create an Urostomy (stoma) like I have? Or will he urinate via an colostomy as a combined unit?

If you need any help adjusting to the life of having an Ostomy, I have nearly 4 years experience now, and there was a distinct learning curve. Having access to a good stoma nurse really makes a big difference in the early days, as it can be very frustrating.

I feel for Pete, but confident, over time, he will heal well. Just going to take a lot of special patience on both of your.

Best of luck,

David
Posted 3/21/2014 3:12 AM (GMT 0)
Di & Pete,
You guys are probably amazing together. Here is wishing it doesn't take too long for you to drink good wine together. Di you did well.
Bill idea
Posted 3/21/2014 12:31 PM (GMT 0)
Thank you one and all. David, yes, he has two stomas….I have learned to change the devices every five days. It isn't as bad as I thought it would be…Peter is handling everything pretty well also, although angry about things. He'll get over the anger as soon as he starts to feel better. You are right about the stoma nurse. The visiting nurse that came yesterday, is not a stoma nurse. I really think he needs one to come to the house. Thank you. Di
ps..we still don't know whether the PCa is gone. His last PSA was 15.5 . The doctors are hopeful that the exenteration will take care of the rectal cancer, the fistula AND the prostate cancer. We shall see.
Posted 3/21/2014 1:39 PM (GMT 0)
Yes, be sure to request a home stoma nurse. Even though my wife is a nurse, the whole stoma thing is a different animal. I had one for about a month, and she helped us work through all the difficult parts. Most stomas are "outies", while my ended up being an "inny", which makes finding a device more difficult, not only to find, but to adhere properly. There was a time where we couldn't get one to last more than 2-4 hours, it was frustrating.

I can change one myself, in an emergency ,but's its hard to line it up right standing up in a mirror. My wife usually inspects the stoma herself, and has the change out down to about 2 minutes per week. We change once a week, and sometimes, it can streatch to 10 days. Perhaps 1 out of 10 times, a device will fail, which always causes me grief. However, in nearly 4 years, never had one fail in public.

If you need any help or advice, be happy to e-mail you my phone number.

David
Posted 3/24/2014 6:00 AM (GMT 0)
Di,
You made well thought out decisions based on everything you knew at the time. Sometimes the Universe throws us a curveball that defies all the probabilities. It's not fair -- it sucks!. Hopefully Pete is in the home stretch now and the worst of the ordeal is ending.

- Allen
Posted 3/27/2014 9:48 PM (GMT 0)
Still thinking and praying.. for you both, Di and Pete...
( and all in your positions)

I can understand his anger...

I spoke with a chap yesterday, Dx'ed with PC..
His specialist only offered radiation, and gave no hint of possible side effects..
I suppose that if you are 70, then it does not matter if you onlly make it to 80.. :-(
..
.
Posted 3/27/2014 11:24 PM (GMT 0)
Fistulas can occur after radiation or surgery. In fact, I think they are more common after surgery. Fortunately for the rest of us it is a very rare occurrence after either. These rarities add to the reasons we have to carefully consider the pros and cons of any treatment. I just read about a fairly simple, inexpensive test (there are expensive genetic tests) that has good predictive ability for whether someone is likely to suffer post-radiation. Maybe it will become routine someday.

- Allen
✚ New Topic ✚ Reply