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Has anyone had pelvic exenteration surgery?

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Posted 2/9/2014 7:45 PM (GMT 0)
Major new problem…we have to solve and figure out.
After recurrence of the fistula after salvage surgery after radiation failure, the doctors found a new colon cancer at the site of the fistula. Now they say because of the radiation damage and two surgeries after that, that they must do an exenteration surgery, which is basically taking out everything in the abdomen…bladder, rectum, colon, and anus. with two permanent ostomies.
He was scheduled for it last Friday,at MSK, but they cancelled after Peters INR was a little too high. This is a radical radical surgery, and we are rethinking it. It is scheduled now for March 7. However hard the fistula is to deal with, I am thinking that a pelvic extenuation would be devastating to him. He already is in pain from his shoulders, and he has an artificial hip.
I looked up this surgery and it is the most radical of any pelvic surgery. Poor Peter has struggled with the SEs of the Pca treatment for 12 years.
The one thing we have to figure out for sure…is the new cancer colon cancer, like one dr. says, or what the surgeon at MSK took the new biopsy of. If it is prostate cancer mimicking colon cancer, I would think he could go on Hormone Therapy. His spa is over 15.5 now. Has anyone either had or known anyone that had this radical surgery.. " pelvic exenteration" it is called . Thank you. Di
Posted 2/9/2014 9:19 PM (GMT 0)
This is a dramatic surgery and I understate the situation. This is recommended when there is no other possible way to preserve life. I seriously doubt you will find anyone here with this surgery as it is done rarely. I cannot say if this is the proper course. Only a team of doctors would suggest this.

This situation is far, far outside of the field of laymen such as we.
Seek the very best professional opinion and ask everything twice. Three times.
I wish you the very best blessing possible. Your stars are already in your crown.
Posted 2/10/2014 1:57 AM (GMT 0)
Thank you for this Tarhoosier.
Posted 2/10/2014 2:15 AM (GMT 0)
Your post brings tears to my eyes. What a horrendous situation.

There is a poster, ziggy (or ziggymaster) that got rectal cancer. I know they removed his rectum and he has a bag, but not sure about his colon.

I have his email address. If you email me, I will send it to you (I'll get his permission first)

Mel
Posted 2/10/2014 1:22 PM (GMT 0)
Thanks Mel, " What doesn't kill you makes you stronger", but Im beginning to doubt that….

Yes, I remember Ziggy, and I would like to email him. The one thing this makes me understand better, is how each decision that you make impacts something next. . We are not going to be so easily led on this one. I think Peter's guardian angel stopped that surgery last Friday.
It is easy to think that MSK is the answer to everything cancer…but educating yourself is the first step in being more powerful in talking to the doctors. And, unbelievably we thought we had done the right thing in each decision that we made…so ?? Di
Posted 2/10/2014 2:16 PM (GMT 0)
I am so terribly sorry that the decisions you have to make are so hard. Please look after yourself and I send you prayers for your husband.

An
Posted 2/10/2014 3:41 PM (GMT 0)
I am so sorry to read about your difficult situation. I am sending healing thoughts and prayers your way.
Posted 2/10/2014 6:36 PM (GMT 0)
I am sorry to hear about your situation. Indeed in Dec 2012 my GI doc found a rectal mass next to the anal verge (basically low enough that I could feel it with my finger).....it was thought to have been caused by my SRT done in 2004. Due to prior surgery for adhesions and the radiation received I was considering a difficult case and was referred to UCSF's chief of colorectal surgery. I had surgery Jan16, 2013....they removed my rectum, anus and 9 inches of colon. I have a permanent colostomy. Then followed with 6 months of folfox chemo. I have adapted to the "bag" , still a pain but manageable.....the stoma looks like an alien being but it pretty easy to care for. All in all not a pleasant experience but I'm doing ok....I think the worse thing the chemo...it was brutal and I still have moderate neuropathy in hands and feet...but considering the alternative !!
Your surgery sounds much more involved.....I post on a colon board, and MSK is considered one the best places in the U.S. for colorectal cancer/surgery......

Feel free to contact me if you would like to talk.
Terry
Posted 2/10/2014 7:03 PM (GMT 0)
Ziggy:

Thanks for posting here. Hopefully the person will now communicate with you.

Glad you are doing reasonably well!

Mel

Posted 2/10/2014 7:26 PM (GMT 0)
Thank you Mel.

T
Posted 2/10/2014 10:06 PM (GMT 0)
Dear Ziggy and Mel Thank you very much. I am going to email Ziggy. Di
Posted 2/15/2014 3:58 AM (GMT 0)
I wish you all the luck in the world. My pelvic exenteration is scheduled for March 10. I don't think anyone can understand what facing this decision does to a person's mind. I've had doctors at three cancer research institutes assure me it's the only chance for a cure. If it doesn't cure the cancer, it will at least reduce the amount of discomfort. Cancer has invaded bladder and probably rectum and some nerves; I'll probably walk with a limp the rest of my life but I'll be alive.

2013 TURP with diagnosis of Stage IV prostate cancer (rare mucinous kind)
2013 3 major heart attack same week started Lupron
2014 scheduled for pelvic exenteration
Posted 2/15/2014 12:46 PM (GMT 0)
Dear GreeneR….. Thank you for writing. Where are you having the pelvic exenteration on March 10? Peter is scheduled for the exenteration on March 7 at Sloan Kettering. He would really like to talk with you if you would be willing. He was waiting and trying to decide whether to go ahead or do nothing. Now is it not possible to do nothing. The fistula and cancer together are causing horrible horrible bathroom problems. So the surgery is a real must. We are going to have all the pre surgical testing and other things that they do on Feb 28. Di
Posted 2/15/2014 1:12 PM (GMT 0)
I've made my email address public. Email me and we'll arrange to talk.
Posted 2/15/2014 1:51 PM (GMT 0)
Divo and Green,

Three and a half years ago my niece had this surgery in response to a very rare and aggressive cancer of the appendix. Her cancer was so far advanced and significant when diagnosed that the surgery (one of several) was not expected to be curative. She tolerated the surgery well for as significant as it was. She was treated at the UCLA Medical Center.
Posted 2/20/2014 10:03 PM (GMT 0)
I had the pelvic exceneration surgery on July 15, 2013. I'm seven months in recovery. It is a very rough surgery. As for now I am cancer free. I am a 43 year old female, cervical cancer stage 3b advanced stage. I had the surgery and now I have a wet ostomy which is a urine and bowel stoma all in one. If anyone has questions about this surgery please feel free to call there is a lot the doctors do not tell you and there is no support groups. Please find out all the information about this surgery before you make the decision on it my phone number is 1 dash 740 dash 525 dash 8647 I'm from Marietta Ohio. I'm not very good at this computer stuff so a phone call is best.

(I have "obscured" your number a bit so that automatic data harvesting programs will not find it so easily. We do prohibit personal information in open posts, so let me strongly suggest that you put the number in one of the profile fields that members can see, but not passing spammers. - 142)

Post Edited By Moderator (142) : 2/21/2014 7:29:05 AM (GMT-7)

Posted 2/21/2014 1:42 PM (GMT 0)
Thank you Linda. You are a brave woman and I appreciate talking with you last evening. Your words helped me, and will help in the future with Peter's operation, which is scheduled now for March 7. Di
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