Pelvic Exenteration surgery yesterday

Yesterday was the longest day in plus 40 year marriage. The exenteration surgery ,(removal of bladder, colon, rectum, and anus, ) leaving two permanent colostomies, was the latest in SEs of prostate cancer.
Not to scare anyone, but, you must realize that each choice you make, (and often, you think afterwards for awhile, that you are right), there are consequences. Impotence is often the one that scares the most . Be aware, that that is NOTHING in the long run.

The initial external radiation and seeds failed. Salvage surgery five years later produced incontinence and a first fistula. After an AUS installed, and multiple fixes that never totally worked, another fistula and radiation induced rectal cancer, which led us to yesterday.

Don't get me wrong, it has not been totally bad. We continue to enjoy life, travel and friends, and our lives together. It is just not what we would have expected, but then no ones life is what you think it will be.

Peter and I both say..if we could do it over, he would have had nerve sparing surgery from a wonderful surgeon, and then not worry about recurrence, use Viagra, pads, and enjoy life. If cancer begins to return,
Watch the psa, but don't worry too much. If it gets too high, see
about radiation then. If it comes back even then, there are HT therapies that go on for many many years .
We don't talk often about the choices that were made, but, peter talked to both our sons who are In Their late 30s about his decisions. The biggest error that we made was having the salvage surgery after the radiation.
I hope I didn't scare anyone or make worries. My focus is on those who are choosing what to do. Each person is different, and more importantly, each doctor is different, and each cancer is different. Radiation might be fine for some, and maybe surgery may not be. Just don't have radiation because you think it will be the easy way out. It is NOT the easy way out.
There is no easy way ..you just have to find you own way.
Di

Divo,

Love can conquer so much. I hope that this big step works well for you and your husband, all things considered.

-Gedman

Hi diva,

Sorry about you and Peter's situation. Sorry I don't know anything about what you're going though, but keeping you both in my thoughts and prayers.

Dave in Bartlett, TN

Well, that is a very good question. It was dr Eastham at MSK, in2007,where we are today. I asked him then: why, if he wasn't a candidate for surgery before, why was he now? looking back on it, I really think that they thought they could debulk the tumor and that it was still local. He took out a large margin and also lots of lymph nodes. One of the nodes was cancer.

I think also, that it was a challenge, as very few surgeons In The us will attempt salvage surgery.he and Scardino were known to be the best.
They did tell us that it was risky, but because his bone scans were clear, and the Pet scan showed nothing..the only indication was a pretty fast rising psa. They thought it was still localized, and at the least it would buy time. Peter had such a hard time with the lupron that he took earlier, that he thought the salvage surgery would work and be better. It has been six years, but those six years were extremely difficult: incontinence, AUS, repairs, blood clots, fistulas, on and on.
Yesterday before the surgery, I took in a little bottle of holy water that our son brought from Lourdes France. When we were presurgery, and the four doctors were finished talking to us, I pulled out the holy water and put a drop on all of their hands. None that I knew of were catholic, but they all liked it. that is how I deal with difficult problems. You gotta have hope, faith, and love, and the greatest of these is love. Di

Thank you very much. Pete is doing well. Yesterday he was up walking, and today he walked 5 times around the hallway. Knowing him, he will be doubling that every day. They have him on lots of pain meds with the hand press button.

I will be eager to see the pathology report next week.

Wow, and I thought my radiation damage was bad. Your story is shocking, and hard to read, let alone bear. I was left with one Ostomy, couldn't imagine dealing with 2 at the same time. My heart goes out to the two of you. We too, are about to hit our 40th anniversary, and have been through so much together in our health situations. Certainly is a good test of one's marriage.

Funny Lourdes was mentioned. Toying with the idea of going to France next year, and a visit to Lourdes, wouldn't mind a shot at the waters there.

Hoping for better days head in your intense journey,

David

Divo,
Thank you so much for taking the time to share your story with us.

I am still fighting incontinence issues 18 months after surgery and a PSA that is just starting to rise but my problems are few compared to Peter's.

"There but by the grace of God go I"

Prayers to you and Peter

Bill from Florida

Divo...

How is Pete going...?

We are still praying.. in Sydney
..
.

I will pray for you and yours, which is the best I can do. And it really is the best of all options, before and during. I also have planned a trip to Lourdes in the past , but never followed thru. Not specifically for a cure, as I believe that has been accomplished, more to feel the spirit of those of faith. It is still one the list of places I want to visit. As a boy I remember the Fatima movie, with Gilbert Rowland, one of my favorite actors of the time and to this day. My fear is the commercialization that may accompany it. I have read Bernadette's biography twice. Not sure what happened there, but something of great worth did, that I am sure of. Not a endorsement of any religion, just a reflection of facts and truth melding nicely. What the two of you have reflects that melding as well…. Aloha nui loa, Logo