pelvic exenteration due to cervical cancer recurrence

My pelvic exenteration is scheduled for June. 28. I had a hysterectomy in Aug. 2004 due to fibroids and my cervical cancer was found during the surgery. I also had never had an abnormal pap smear. I was told that where my cancer was located in the cervix, that it never would have been found during a routine pap smear. My gyno told me that she was pretty sure that she had gotten it all, but recommended radiation as a back up just in cast they "missed" some. I had 5 weeks of radiation and 3 implants and all seemed well. Well, 3 weeks after my last implant, I had a follow up visit with my gyno and a pap smear. Soon after, she called me and told me that my pap was abnormal and sent me to an oncologist out of state for a biopsy because she didn't know if the test was abnormal due to recurrent cancer or if the radiaition was making the test abnormal. I had the biopsy, and sure enough, it was cancer. Now my only option is a pelvic exenteration. Radiation is not an option since I already had it, and chemo is useless. I am only 41 years old with a 3 yr, old. Has anyone had this procedure and what can I expect? All of the doctors are scaring the crap out of me with all of their statisics. Anytime I have a concern and call the oncologist, I get blown off.....like I'm inventing symptoms or something. From the time of my biopsy result until my surgery in June, it will have been 2 months. I'm so afraid that the cancer will spread before anything gets done.

Dear Kyhunny

I am so sorry to hear what you are going thru. Your story sounds so much like mine a couple of years ago (and I am 42 right now). I had my surgery for reasons other than cervical cancer (it was actually for possible OVCA). I got the report from my doctor after my surgery that I was clear as far as OVCA was concerned. I thought that I was out of the woods. I got home on sunday after my surgery and the very next day my gyn/onc calls and says that I have endocervical adenocarcinoma. That totally thru me for a loop.

Well I went thru chemo and radiation (25 external, 3 external boosters and 1 - 3day low dose brackatherapy (sic)) I finished that up in december 2002. I had 2 'normal' checkups and then in June 2003 I had a recurrence. I had the surgery to remove the recurrence (it was just at the tip of the vagina and the gyn/onc just went in to remove that portion of my vagina) I did not have to have an exenteration but ended up losing my bladder due to the radiation damage. I have what is called an Indiana Pouch, I do not have to wear any stoma bags. I just have to cath myself every so often.

If I were you I would get a second opinion as far as the exenteration goes depending on the severity of recurrence. Who is doing your surgery the oncologist or your gyn? I would strongly suggust a gyn/onc do the surgery. Even with my surgery my gyn/onc had a urologist on hand to help her with the surgery due to the radiation and the closeness of the bladder and ureturs to the vagina.

I will pray for you that you do not have to go thru with the exenteration, but if you do talk with the doctor you deal with about an Indiana pouch or other contintant urinary diversion if it comes to that. I will pray that it doesn't.

If you neen any more info feel free to pm or email me

God Bless

I had no risk factors and was diagnosed during pregnacy of cerical caner. I am stilll vulneralbe too. Every time I get a letter from the doctor y heart does a leap. No matter if good news or not. So far thd Cat Scan says no reaccurance. i do nt care about what the statistics say eitrh. I am not a statistic and I am not a routine surgery. I am an individuual of whom the dr took away my insides with the possibilty of seeing the word cancer again leaving my son motherless. It still ssares me too.

but what is pelvic exenteration? read some of my newest posts and you'll see why i'm asking...had an abnormal paps that the dr. is sure that it's caused by radiation but he did do a biopsy on a suspicious spot in the upper cuff of the vagina...

let me know...

thanks in advance

Hi ((Kyhunny)),

I am so sorry you are facing all this and want to send you some s and tell you to remember, as Littlebird does, that you are not a statistic but a unique individual. You can fight this nasty beast. I hope you will consider consulting with the experts -gyn/onc - as perhaps there may be an alternative to exenteration. I will be keeping you in .

Please let us know how you are doing.
s and blessings, peggiesue

Hi Kyhunny,

I know that there are 'several' woman who have gone through exenteration. I am not sure of the spelling but I think one sisters name is 'shepardal'. (sp?) She is doing well. I am positive there are a few others. And, I think they are doing well too. I am sure Shepardal.... could send/direct you to some other women who have gone through this procedure.

Perhaps, you could do a search...


My heart goes out to you. I am so sorry you have to go thru this. I wish I knew more. But, do seach engines...look thru HS and ask your Dr. to fully explain.

Major Hugs.....Life is so tuff sometimes. I think you have a good shot at it. Please keep us posted. I care.....we care.

Diane (baylee6)

HI!

I have no experience with this procedure but I also wanted to just send some hugs and prayers. I can't imagine what you are going through.

And just echo some of the advice of others -- consider finding a gyn-onc if you don't already have one and also consider a second opinion.

You are indeed a unique individual and not a statistic. Sending lots of hugs and good thoughts your way.

Nancy-Anne

Hi, everyone.

Thanks for everyone's support! As for getting a second opinion about this surgery, I've talked to 3 different doctors, and they all say the same thing. My recurrence is at the top of my vagina.

Along with my gyn/onc, there will also be a urologist, and a plastic surgeon involved with my surgery, among others. The urologist is for my stoma and my colostomy. I have also considered an Indiana pouch, but the surgeon told me that I could have more of a chance of infection and complications with that instead of a bag, but I don't want a bag....that's real attractive.

The plastic surgeon will be there to take muscle and skin grafts from the insides of my thighs so he can make me a new vagina when my gyn/onc removes the old one. I just hope that the new one works better than the old one.

I'm just really scared about this surgery. Apparently, this is my only option for survival. I've been having low back pain and pain in my sides and wonder if I have anything to worry about. I wonder if it has spread.

I'm afraid that my cancer has spread since the last time that I had CT scans. The last two that I had didn't show anything, but who knows. Am I being paranoid? Anytime I call my oncologists office about a concern, I get blown off. The nurse always tells me that my cancer isn't spreading that fast. How does she know?

I'm afraid of going in for surgery and not coming back out alive. I know...I'm a big wuss. Sorry if I ramble on and on, but I need someone to talk to and my husband isn't that supportive.

Monica

Kyhunny,

I'm sorry about your diagnosis and I pray that there might be another alternative. However, Diane is right--one of the hystersisters whose username is shepherdpal has gone through the exenteration process and might be able to help you.

You are being kept in prayer.

Blessings.
Marlene

((Kyhunny))

You might ask your doc about a PET scan. Recently, Medicare has decided to pay for PET scans for women with cervical cancer.

A think ((Shephardspal)) has her cancer monitored with a PET. IMHO, it is worth considering before such extensive surgery.

Make sure that the doc doing the surgery has plently of experience and don't be afraid to ask for another pre-op consultation with him/her to make sure all of your questions are answered before surgery.



Dorrie