Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
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
I am a survivor. I am 59 yrs old. started at age 29 yr with cervical ca. had rad and rad implant etc---3yrs later it recurred cancer was in my bladder vagina and thougt rectum. So prepared for that. I knew nothing.i year later ca in my low colon. so exeneration is complete They have nearly all my parts.You have to look opn in like I did I had 4 small children to take care of . So I told the DRS at Vanderbilt hosp to do whatever they could to so i could raise my children.God answered my prayers i can do any thing any body else can do. I work as a medical assistant 40 hrs a week.Swim garden enjoy family. No I dont like these bags I have but after 25 years you just get used to them as a part of you I have a wonderful husband that helps. I will be glad to help any body that needs information or just need to vent. I did alot of that. BUT I AM SURVIVOR!!!!!
sara, you certainly are a survivor! i'm so glad to hear that you are cancer free, and healthy now! i'm sure that living with the results of the surgery is not easy, but how wonderful that you can be an example of a woman who has survived this. thanks for being there for the women facing similar surgery.
I just had a total pelvic exenteration on March 5th. I'm still very much in the recovery process, but I'm definitely a survivor! Sara is a great source of inspiration to me!
I was originally diagnosed with cervical cancer in 2002. I had a rad hyst, chemo/radiation, and internal radiation. Nearly 6 years later the ugly beast returned. I had bladder symptoms. Since I'd had radiation, my rectum, bladder and vagina were fused together and all had to be removed.
I'm happy to talk to anyone, although I'm still very new at this. I've already had one kidney infection and was back in the hospital for 6 days. I have 3 kids and hope to not have a lot of complications!
The doctor said I have less than 10% chance of the cancer returning. I hate all the statistics, because if I happen to be in that 10%, then it's 100% to me. But it's better than 50% so I'll take it.
My prayers are with your friend.
Jodi
Hello all, I hope you may be willing to help. I have a friend who is in need of a total pelvic exenteration. She would like to talk to someone who has gone through it, since it is very rare here in New Zealand. I'm researching on her behalf, and I hope one of you amazingly strong women would be willing to be in a conversation with her. Please get in touch with me here or through email. Cheers!
Melanie
god bless you Jody...ALL of you!! You give us hope. My dearest friend is going thru the question of should she or shouldn't she, I told her tonight about your response and for the first time she cried, for the first time she has hope. Thank you ALL thank you thank you thank you for hope. Like Pandora we forgot that part, HOPE. Please we are new to this website, despite her going through this for almost two years, we need people for her to talk to. For the first time I allowed myself to cry with hope. You see, I am the silly one, the comic relief, the one who keeps her laughing every day with stupid jokes, but tonight thanks to all of you I cried, not in sorrow BUT IN HOPE!!!! What a glorious word HOPE... THANK YOU ALL!!!!
Catherine L
San Carlos CA
Dear everyone,
I am so glad I asked that question last year. I am so glad so many of you replied over this past year. You girls are so wonderful. It's so good to see people come together and so good to watch people make new friends and come up with information and understanding for one another. I still like to come to this site. I lost my best friend last year, but I still come here to fight with all of you. To hope with all of you. To see all the wonderful things that can and do happen to all of you. I will always be grateful to all of you that reached out to help. What amazing strong women.
Thank you
Pammy
pammy, i'm really sorry that you lost your friend, and i hope that the treasured memories help to ease some of your sorrow. sending gentle hugs....
HI, I have just joined this group. I am 49 and diagnosed with uterine cancer in 2006. Had total hyst,ovaries and tubes. six months later recurrent uterine cancer, Did 6 weeks external radiation and then internal radiation, brachethrapy (sp?). Now , less than one year later, via CT and PET scan and biopsy have recurrent uterine cancer. off to two consults one says do pelvic exentoration. Other says no won't cure as cancer is on the sidewall too close to pelvic bone to create a margin. So do chemotherapy. Prognosis very very poor. 1-3 yrs is what the second consult gives. Says if do pelvic exentoration, I have a 55-75% chance that the cancer will come back again because it has been so resistant. How are you doing long afterr the pelvic exentoration. How many complications have you had. Did you have to do chemo anyway? I have a 5y/o daughter that I want to spend many years with. My husband is very supportive in which ever path I take.
How are you doing now? How is your quality of LIfe. Its a difficult decision. My prayers are with you.
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.....
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.
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
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.
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
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 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 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.
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, 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
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?
Add to the discussion