pelvic exenteration

Hi,

I am new to this website but i read some other forums and everyone was very helpful. My mother is going to be undergoing pelvic exenteration and I am beside myself scared. I know nothing about it and everything i read about it sounds like jibberish.
Is there anyone out there that can help me and inform me about this procedure.
I want to fully understand what she is going to be going through and quality of life.

dear svilly...so sorry your mom has to go thru this surgery. does she have recurring cervical cancer? i believe she will have to live the rest of her life with a colostomy bag. there is at least one other woman who posts occasionally on this forum that has had this surgery and she is doing very well. another woman who posts occasionally will also be having this surgery soon. i've heard that people can live fairly normal lives without anyone even knowing they have a colostomy. i'm sure emotionally it must be very difficult to accept but with support from loved ones, your mom will persevere and make the best of her life.

i don't have much knowledge about this, so i'm hoping that some of the other ladies with personal experience will see your post and give you some accurate information. best wishes to you and your mom.

Thank you for your support! she had cerival cancer 4 years ago when I was in college and got it removed...recently when she was in colombia visiting family she got really sick and had to undergo surgury bc the radiation she did awhile back caused a blockage i forget where...but she was not able to go to the bathroom. we believe bc of that surgury it exposed the cancer to spread, just a guess by us. Chemo was given as an option but my mother did not want to do chemo and opted to have this surgury instead. we are all being very supportative and are willing to do anything for her but its just really hard for me to take in. I am only 26 years old and i want my mother around to see me get married and one day have kids.
i am trying to think very positive! she is undergoing the surgery within the next few weeks i want to say end of feb. she is meeting with 2 other drs who are going to be assisting with surgury.
again thanks for you knowledge it feels comforting to speak with other woman who are going through the same thing.

Thank God for sweet daughters.

I will not lie to you this is a very serious surgery. It can be done to relieve symptoms and can also be done for a cure. When you have radiation it fuses your insides so the surgery cannot remove the tumor or tumors without damaging the internal parts like the colon, bladder and vagina. Usually the patient winds up with two bags.

I did go in for this surgery but there were stray cells in the abdomen which aborted the surgery. I do know a few who have had this surgery and seem to be doing quite well. It is not easy by any means but doable.

You might want to research the word "stroma" to learn about the bags and care of them. There are several good videos out there. Your mother will get good training from a stroma nurse, probably after surgery. I am sure her drs have explained this to you.

We do have one sister here who will be having this surgery on the 14th. Look at it as a good thing and can hopefully bring about a cure for your mom.

She will have a much longer recovery time but it sounds like she has good support. I know it is a very emotional surgery but just remember there are many, many people out there with the bags and are doing great. Even little children.

Please keep us posted and tell mom to take a day at a time and she will come through this.

God bless,
Juanita

hi Juanita,

Thank you for your support and knowledge! I am going to read about the
stroma bag, I want to try and make this transition for my mother as comfortering as possible. Me and my sisters and brother are being very supportative yet also understand that she is going to go through some psychological stuff due to the bag(s).
After reading about this and speaking to other woman I do not feel as scared and very hopeful. I guess now I am just hoping when they open her up they see it did not spread so they can preform the surgury to elimiate the reoccurance of the cancer!

thank you everyone! Its been really tough but I finally slept a full night lastnight!!!

SVilly

SVilly,

Glad you are feeling some better. May I ask you a question. Why does your mother not want chemo? Has she heard horror stories or does she have other medical problems? Exactly what type and stage of cancer does she have? If you have posted this info I am sorry I did not see it.

My daughter has been by my side also. She flew from Ca to Texas, where I was at the time, to go to the dr with me and be there for the surgery. She had told the dr that I would never go for that type of surgery but I did not hesitate. They just found some stray microscopic cells in my right pelvic side and aborted the surgery.

Worry is a terrible emotion because it has no value at all, except if we worry our kids are going astray and the worry warns us....lol.

Tell your mom that we know what she is going through and we will be here for her and her family.

Juanita

Hi Svilly,

Your mom is lucky to have you as a daughter.

I will be having a pelvic exenteration this week, on the 14th. I have a recurrence of ovarian cancer that has not responded to several different chemos and radiation.

I have to say that I am quite nervous about it all. In the city where I am living, I saw 3 surgeons that refused to perform this surgery on me. They basically told me that I should go in for palliative care and prescribed several types of morphines for the pain.

We (my dear husband and support system) found a surgeon in another province (I live in Canada) who is willing to do the surgery. It is a long and serious operation. As it was explained to me there are two types of pelvic exenterations: posterior and total exenteration.

My tumour has grown into the pelvic walls which is why no surgeon would perform the surgery -they say that if the cancer has spread they abort the surgery. But this surgeon, I was told, is very 'aggressive' and has agreed to perform it, of course, he told me, that in my case, it will not be a cure but will help to relieve pain and this awful bleeding I have had for the past two years. He'll try to remove as much of the cancer as he can....

I will definitely need a colostomy (poop bag) and, obviusly, am not looking forward to that. If he will have to do a full exenteration (remove bladder & vagina too) than I'd need another bag (for pee) ... he'll only know when he's in what needs to be done.

Please tell your mom that she's not alone ... I'm doing it this week. If I can do this ...any one can. I'm also wondering why she opted out of chemo ...I did the same when I was first diagnosed in 2004. I had the first surgery and no chemo ... I recurred 9 months later. Every one has their own reasons, I'm sure. I know my reason was fright and denial. I didn't believe that I, a 41 year old healthy, fit woman who has never been sick could have cancer. And I didn't want poison in my blood making me sicker and losing my hair. Today, I am willing to do anything to live....

I know I'll have many problems to deal with after this surgery ... I still don't know how I'll 'live' with this bag (or bags), how I'll see myself as a woman (may need vaginal reconstruction) and if I will still have cancer in me, then why did I go through all this? I know my husband tells me everyday how he doesn't care about bags and loves me no matter what. And I know that surgery will hopefully give me extra time.

One of the original surgeons found out I'm having the surgery done elsewhere and she told my oncologist that the surgery will not be good for me .... so I still have my dark thoughts about it all. But I trust this new surgeon and I know that my time is limited if I just do nothing.

Support is #1 at this time. My own family has been lacking in that department but my husband and his family, along with friends and the women on this site have been my life line. All you can do for your mom now is be there for her, listen to her fears, reassure her that she is a strong woman and needs to fight this, that she is not alone.

I will keep you both in my thoughts and prayers. s

I think the word to research may be "stoma", not "stroma".

Mary D.