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Has anyone here had a pelvic exenteration , or know someone who has ? I was hoping to find a survivor . My friend is headed that direction , and I wanted to find her more hope than I can give .
Thank you ,
Pammy
Cancer Premarin Surgery Hysterectomy Uterine cancer Cervical cancer Chemotherapy Pain
My mom was diagnosed with cervical cancer IIB 14 years ago. She was treated with radiation. She is now 62 years old, and cancer is recurred. Doctor recommended Total Pelvic Exenteration then follow with radiation. We are in the process of making a decision. Can any survivors please share your experience of your life after Pelvic exenteration. How do you cope with it? Could there be any complications in the surgery?
We are trying to get as much info as we can to support our decision. Thank you so much. We look forward for your response.
I had a total pelvic exenteration in Jan. 08. I am 39 married with two beautiful daughters. I can not tell you how important it was to talk to someone. I don't talk to alot of people about the graphic details but I do have a few and it has helpe. Although they cannot relate they listen to me vent. I live in KY and there was no one that had a similiar cancer or surgery that I knew of. It is hard to deal with the surgery itself nevermind having no one that can relate. Please tell your daughter that it does get better. I have went on trips with my friends and family. I work a 40 hr wk with kids. No one knows I have a colostomy at all. I have not let this define me. I love life and it is so worth living...I will keep you and your daughter in my prayers.
Hi,
So glad you are doing well. My daughter had a pelvic exenteration almost 1 year ago. She is 48, married, no children. She had nerve damage in one leg and is in constant pain.
She is very depressed and cannot yet deal with the change in her body. I tried to get her to join a support group or go online and meet others, but she will not do this. Do you have any advice for me to give her. I worry so much. thank you
I had a pelvic exenteration in June. 2005 due to recurrent cervical cancer. I was lucky and only ended up with one bag.......they removed my bladder. They also removed part of my colon, surrounding lymph nodes and half of my vagina. Although they did build me a new one. I haven't really had many problems, maybe a couple of kidney infections and a dry vagina which I control using Premarin creme. My doctor has also told me that I have a 50/50 chance of it coming back even after having the surgery. So I try to eat healthier and take supplements and try to make sure that it doesn't ever come back. Has there been anyone who has ever had a Pelvic Exenteration and they had the cancer come back?
I agree with Jodi,But I have met some patients that did fairly well in their late 70's and 80's. Alot has to depend on her general health, and her emotional and mental attidtude. I am sure they will be honest and give her all the information. I know it is a hard decision but if she has that desire to live, and can withstand the time it takes to be under anesthesia that long, she may do well.This is a touch one at her age,or at any age I should say. She and your family are in my thoughts and prayers. Any way I can help let me know Sara
Oh my goodness, she's 82? I'm not sure. My goal right now is just to make it to the age of 80! I really don't know if anyone could make it through the surgery at that age. It's a very long surgery with a long recovery. But each person is different. I'm 38, so 82 seems like a long ways away. But if I was 82 and wanted to fight for my life, then I would probably do whatever the doctors were willing to do.
I'd be happy to talk to her or you if you want to call or have more questions. I promise to be positive and honest! :o)
God bless,
Jodi
Hi Jody,
Thank you so much for sharing your experience. I'm so glad I found this discussion group, because this is so new to us, and so difficult to deal with alone.
My mother-in-law's cervical cancer has returned after 10 years, and the only way to "cure" it is pelvic exenteration surgery. Until this morning, I have no clue what that means... I've been doing research all day today, and everything I've read about this surgery is very complicated. I very much like to hear from people who has been through the surgery.
My mother-in-law is 82! Would you have agreed to undergo the surgery if you were 82?
Any input is highly appreciated.
Alicia
Hi everyone,
Have'nt been able to be on this board for awhile, just wanted to give anyone that is fighting this battle encouragement and hope. I turned 60 in Dec. and still able to lead a pretty normal life even after a total pelvic exenteration. Jodi you are awesome, you have come so far from last year, I can just tell. I was in my 30's when this radical surgery was done and did not know anyone that had survived. To me just knowing people that are living with these changes make us feel like we are not alone. I work every day and do what most people do and have a very supportive family, and have a lot of faith in my Lord Jesus, which in my case is the only way I have been able to live from this disease. If I choose to tell anybody they act so surprised, they say "but you look so good"> I don't take that personaly. Cancer does not change who you are unless you allow it to destroy you. Cancer has taken so many of my friends and family. We have to keep on fighting. Good luck to all of you brave people. If I can help anybody please don't hesitate to ask. Sara
Hi to everyone,
im a guy living in Wales who had a pelvic exenteration in 2006, following chem and rad therapy, resulting in a colostomy and urostomy. I havent been able to find any guys over here who seem to have had this surgery, so forgive me if I share my thoughts on this op here. The op is hard in two ways? Theres the adaption to a new way of doing things, and then your mental attitude to it. Personally ive learnt to cope with the bags, even though their a pain!! but its the mental attitude to them that you have to keep under review all the time. Always be strong and always think positive!
Hi cr59
Hi there when in March are you going?
I have heard the road to recovery is very long and difficult. I would like to thank you for telling me all about this as I haven't heard too much. I have alot of support from my family, my kids and my faith. My husband will not be around as he has decided to go his own way. I think I will be well looked after by my mom she is a PSW which will really help. I also work at a retirement residence so I have great support there as well.
I think its really important to hear about survivorship to us right now, I know we are going to have a hard time in the begining but maybe with each other and all the prayers we will get through this.
Where do you live?
What kind of cancer do you have?
HI, I will be undergoing pelv.exent. in March too. I was able to email with Jodi on this website. I also asked my doctor's RN if there was anyone of his patients who went thru the procedure that would be willing to talk to me. There was. Both women have been informative and supportive. It is a major operation. We will be in hospital for many weeks and the post op recovery is long. Both women state that after 9months they feel like they are 80-90% themselves. Theycan take walks and they can drive a car. They still are incurring side effects from the surgery. No testing for cancer yet. That is done 1yr after the surgery. But one has some urinary problems and the other is having problems with swelling in her privates due to excessive lymph collection. They both has experienced problems with their neo-vaginas. They both sought out alot of support during the first several months. Friends helped out with household chores, cooking etc. Husbands have been totally supportive. Lotsa prayers have been sent to both.
I was really down about this option but speaking on the phone to the one women - I heard success of survivorship in her voice. She said the road is difficult but she was glad she made the decision to get the pel.exent.
No fooling-it is a serious operation. But when we have children what other options gives us a chance as a longer life? none. Best of luck and my prayers will include you. cr59
Sara48, You are a true inspiration. It seems like you have conquered the beast once and for all. I love to read stories like yours where you have overcome this disease and gone on to live, love and enjoy your life. I am sorry that you have been through so much in the past, but happy to hear that you are able to do everything that you do! Amazing. What stage and type was your cancer when it was originally diagnosed?
Hi Jody and Sara
I'm a 40 year old mom of two beautiful girls 9 and 11. I was so glad to read your POSITIVE stories. I think if we don't think positive results will not be positive.
I was diagnosed with cervical cancer while having a total hysterectomy. When the doctor found the cancer he stopped and left my cervix, so onto chemo and radiation in 2006, I finished rad and chemo in Sept. of that year. So this past Jan. I went for MRI -results - the monster is back, my gyn-onc says the tumor is 2 c.m. and can be removed by surgery. I would have to have a pelvic exenteration. I am booked Mar. 11. and very nervous as I will have two bags for the rest of my life, but whatever it takes to be here for my kids. Can you tell me anymore? Recovery wise>or to prepare myself.
Once again the optimism of both of you has been very helpful to me.
Hi Jodi, First I want to tell you what a beautiful girl you are. Was it hard for you to imagine the cancer coming back after the 5yrs. Where you finally beginning to think it was completely over. I can't imagine what you have been through. You seem to show great strenght and determination toward conquering this devastating disease. I hope your recovery is coming along well and that you have many people who love and support you.
Hi Jodi, I go to my second consult on Jan 8. I just requested to be your friend to contact you privately. Thank you for being generous with your time and personal information.
Did you get a colostomy too? Have you had problems with that ? and if so what?
How did the vag. reconstruction go re: hospitalization, recovery etc.
With all of this how many folks do you think you needed to assist you. My parents have past away and my in laws are sickly and elderly themselves so we cannot rely on our parents.
did you get a home health nurse:
What are the costs of the maintaenaence of ostomies and bags catheters etc.
have you been able to attend social events
They say I would have to have both ostomies and still 55-75% chance of cancer coming back and then have to deal with chemo:?
Would you take this on with the side effects of chemo too?
Once I get the okay to be your friend I will leave my phone number so you and I can talk.
I really and truely appreciation your openness and graciousness to talk about this subject. cindy
Hi cr59. So sorry I haven't responded sooner! I was out of town for the holidays. Let me try to answer some of your questions here and if you would like to call me and talk more one on one, just send me a private message and I'll give you my number. I'm VERY open and will answer any question possible!
I guess the main question is if the surgery was worth it. Yes, my life is different, but it's doable. If I had to do it all over again, I would do it. I've had 4 kidney infections and am going in for a minor surgery on Wednesday to clear a ureter obstruction. I also had a vaginal reconstruction surgery in September. It's a long road, it's difficult, it's different, but it's a second chance. And chemo is not curative. This is my best chance for a cure. I am a stay at home mom, so I think that makes it easier. I can't imagine having to go into work, even though I have many good days.
If I was in your shoes, I would find someone who was willing to do the exent and felt confident that it is a good decision. But even my doctor (who I love!) said that if she opened me up and the cancer was too far gone, she would not be able to proceed. She scraped and cut and even worried that damaged nerves and I would shuffle when I walked, but it all worked out and I'm walking fine.
I am so blessed, but I'm still afraid of the future. My kids keep me going, I eat very healthy now, and every day is a new day. You can do this, but I hope you don't wait too long to make a decision. From the time I found out the cancer was back to the time of my exent was only 3 weeks. My doctor worked fast to make sure it would stop growing.
There is another woman I spoke with who had chemo and radiation just prior to surgery to shrink the tumor in order to make the surgery more successful. Please keep us posted and stay positive. You can do this!
Jodi
Thank you so much for your response. I am sorry for your loss and for the request to remember her struggles. You are a great friend. I have good support from friends and hubby. It truely is a tough decision. Thankyou for the site. It is beneficial.
Dear cr59
My friend Tammy, very much wanted to do the Pelvic exenteration. Her Doctor said it was her best chance, and explained everything to her. She was given a very good chance at survival if she could have done it. Unfortunately, the way the tumor was growing, it didn't allow for it to be done. It became very complicated very fast. I am not sure you want to read her story. I don't know if it would help or hurt. But I will post her website that I made her. And there is a letter there she wrote about some of her battle with this. I know she was such a fighter and did everything she could. And would have done that too.
She did do chemo and radiation as well .
www.cervicalcancerhopeforacure.org
If there is anyway, I can help you, or you need someone to talk to, I would be so honored.
Thanks,
Pamela
Did your friend decide to do the pelvic exenteration or did she choose chemo route? If it is too difficult to talk about I understand. I am having to make the similar decision to do pelvic exenteration and chemo or just chemo.
Hi Jodi, Happy Hollidays. How are you doing now since your pelvic exenteration. My doctor gives me a 55-75% chance that the cancer will return even with the pelvic exenteration. I am wondering about your trips to the doctors due to complications etc. Please, if you can, talk about your life after pelvic exenteration. did you do chemo afterward? My doctor suggests chemo since it hasnt spread yet.....
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