Lost in need of answers

My mom has a reaccurance of Cervical Cancer and Vaginal. She had 6 weeks of Chemo and Radiation. The dr's say that is her limit. After only 6 months she has it again, only it has spread into her vagina. The Dr's say she needs a total pelvic exanteration. That means removing her bladder, cervix, vagina everything. This is very scary. she will have 2 ostomy bags. 1 for pee and 1 for poop. I can not imagine this. If there is anyone who has had this operation or if you know anyone please reply to me. We need some support and positive feedback before she makes the decisian to go through with this surgery.


  • dopeyy
    dopeyy Member Posts: 1
    april i have been throught the chemo and radiation just like your mom and think i may have a reaccurance could you please write me and tell me what your mothers symtoms were when her cancer returned. i hope your mother recovers and i will pray for her
  • SharonEL
    SharonEL Member Posts: 20
    Hi April,

    I am sorry that your Mom is having such a hard time beating this disease. This surgery is her best hope. I have met someone online at www.hystersisters.com who has had a partial pelvic exenteration. She had part of her colon removed and had a temporary colonostomy and is doing fine now. She did not have the complete one, however.
    I had vaginal cancer and had a complete hysterectomy with a partial vaginectomy. I am now in a complete remission.
    Also at www.hystersisters.com. , I read about someone who had to have their bladder removed. She is also doing really well now.
    I suggest you check out the Cancer Concerns forum at hystersisters.com. There are some very helpful women there.
    Just make sure you have the best gynecological oncologist that you can find do her surgery.
    I will keep your Mom in my thoughts.
    Good luck,
  • kyhunny
    kyhunny Member Posts: 5

    I just read your message reguarding your mom's recurrent cervical cancer and the possibilty of a pelvic exenteration.

    I had the pelvic exenteration done June. 28, 2005. I too had recurrent cervical cancer. I had a hysterectomy done in Aug. 2004 due to fibroids and that is when my cervical cancer was found. I was told that it was relatively small and that they were sure that they had gotten it all and it was recommended that I have radiation treatments "just in case they missed some".

    Well, I started external radiation treatments in Sept. 2004, and finished in December. 2004. Then I had 3 internal radiation treatments (Jan., Feb.,Mar.) I was given a good prognosis and was sent on my way. 11 days after my last treatment, I had my first post surgical follow up visit with my gyno. She did a pap smear, pelvic exam, etc. A short time later, my gyno calls and says that my pap smear result came back bad and said that I needed to go to Vanderbilt (Nashville, TN) to get a biopsy done. She said that she wasn't sure if it was cancer or the radiation making my test results come back bad.

    So, about 3 weeks later I had the biopsy done. Sure enough, it was cancer again. I don't know if it was a recurrence or if it just didn't respond to the radiation. So I was told that I needed a pelvic exenteration. I was told that it would involve the removal of my bladder, rectum, part of my colon, the surrounding lymph nodes and my vagina. At first I said no. That is too much of a life change for me. My doctor then told me that this surgery would be my only option to save my life. I had already had radiation and can't do that again, and chemo would pretty much be useless. I was told that the chemo would slow the tumor down to some extent, but would not make it go away entirely. I was told that if I decided to do nothing, that I would be dead in 18 months. Then I started thinking.....I am 41 years old and have just recently adopted a 3 yr. old little girl. I need to do whatever it is I have to do in order to be here for her and to make sure that I am around to raise her. So I decided to do the surgery. My tumor was in the top part of my vagina. I was also told that at the beginning of the surgery, they would do an "exploratory" look see. If everything looked good, then they would proceed with the surgery. If the cancer had spread, then they would close my up and send me on my way and not even put me through the surgery, etc.

    Well, they got in there and thank God the tumor was relatively small and hadn't spread anywhere yet. They did remove my bladder, but didn't have to remove any of my colon. So I only have one ostomy bag (pee bag). They also removed the surrounding lymph nodes and part of my vagina. Although they did take a skin graft from the upper thigh of my left leg and made me a new vagina. I guess it could have been a lot worse than it was, but I had decided a while back that I had to do whatever it was I had to do in order to be around for my family. I also was told how risky this surgery was, and I was scared to death! But everything went fine and I was up walking in about 4 days and I was home from the hospital in 10 days. Before I had my surgery, they did a lot of extensive testing on me (blood work, electrocardiogram, etc.) to make sure that I was even a good candidate for this surgery.

    I was also told that even though I had this surgery and all went well, that there is still a 50/50 chance of it coming back. So now I have all of these "what ifs" hanging over my head. I know how your mother feels, I've been there. I am also a member of the HysterSisters website. They helped me through this when nobody else could. Has your mother had the surgery yet? I hope all goes well and I will keep you and your mother in my thoughts.