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post hysterectomy for cc and now vain3..

irisheyestoo
Posts: 3
Joined: Feb 2011

hi all,i was diagnosed with micro invasive cc in late summer 09 n due to some mix ups did not have my hysto till nov.09...have been feeling unwell almost all the time since,with bladder problems i can pee every 10/15 minutes and it hurts.i have almost constant pain in my left side n deep in my back and am so so tired all the time..was back for a check up in dec. and consultant rang me on jan 19 to say he didnt like my results n seen me the next day to tell me from pap severe vain3 was found n that he needed to bring me into hospital on the monday(24)to put me asleep to do more extensive tests...havent had results yet and am so scared i cant eat or sleep and am in lots of pain..i have 5 kids n am finding it hard to cope and function..i am in ireland by the way and vaginal cancer /vain are very rare here im told...any advice please i would be most grateful..praying for everyone on this scary journey xxxxx

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I'm sorry your having such difficulties. Your message is very confusing. Where you previously dx with cervical ca and now vaginal ca? Did you have a total hyster?

irisheyestoo
Posts: 3
Joined: Feb 2011

sorry if i seem confused...i am ..yes i did have a total hyster for 1a2 cc and am waiting on results as my vaginal vault smear n colcospy came back as vain3 in january...is this called residiual or recurrent cc in my vagina.what happens next i dont no,was hoping someone here could shed some light on it for me..maybe things are named n done differently in america than here in ireland....thanks for replying .....

dauntdi
Posts: 4
Joined: Mar 2010

I am not familiar with your condition, but I had fallopian tube cancer over 3 years ago. I had frequent bladder infections, back pain and was tired. It sounds like you are getting the workup you need and I do hope your treatment goes well. I had total hysterectomy and 6 rounds of chemo and I am doing great. I know how scary this is for you, but try to keep a positive attitude and know that others are with you in spirit.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

This would be called a recurrence with mets to vagina. I am so sorry! Did you have chemo or radiation during your primary treatment plan? Keep us posted.

Taylor5
Posts: 1
Joined: Apr 2011

Dear irisheyestoo,

I am sorry that you are dealing with this issue once again but i wanted to tell you that you are not alone. I had a hysterectomy in July 2008 due to CIN3 and everything was fine till my first pap smear, post hysterectomy which indicated moderate to severe dysplasia/ VAIN2-3. I had a laser procedure done twice to remove the precancerous cells from the vaginal cuffs and since then it has been mild dysplasia till last week which my pap result indicated moderate to severe, high grade dysplasia and I am going for another colposcopy and perhaps biopsy if needed. In my situation, sometimes my pap results indicates high grade dysplasia due to my scar tissues but what i am trying to say is that i am still dealing with this nasty issue which is a recurrence from 2008.

Hang in there my dear, and hopefully all will be alright soon. Are you seeing a Gyn/oncologist? they are the expert in this and if you are not, I really recommend you to be seen by them. God bless you and your family and things will get better for you soon.

I'll send you a gentle bear hug and prayers.

Taylor

irisheyestoo
Posts: 3
Joined: Feb 2011

Thank your for your reply.Yes i am attending a Gyn/oncologist that i have seen every 3/4 weeks since january,at first after the colposcopy(by 3), a EUA and a wide excisional biopsy he has decided that my best option is to have most of my vagina removed as,in his words.... its not behaving as he had expected and is not happy with my progress or lack of it!!!!i had an mri done 2 weeks ago and it shows lesions on my colon so i have to have a colonoskpy(cant spell) in the next week or so ,my surgon will be bringing another surgon in from england and is hoping to this in early june as he is on a lecture tour in the states for the next few weeks..he is the top man in europe for cervical cancer and invented the equiptment used for LEEP/LLETZ.....im in good hands,he has been so good to me over the last few years,hugs me when we meet n when i leave,even bought me a cooking book from the 1950's as he knows i collect old cooking books..last visit he would not take any money from me n it usually costs 350 euros or over $400..maybe removing my vagina will be the end of this horrible night mare,im in alot of pain and spend the best part of the day n night going to the toilet...no.2's only happen every month or so....it almost seems impossible to be in contact with others with vain3 as it seems rare,from what i read maybe 2000 in the states,250 in britian n 15 in ireland..i have read every possible medical study on it and it looks like they dont no a whole pile on it and nothing on long term results have been done.it does say it is hard to get rid of, the recurrence rates are very high and that up to 22% can become cancerous so if you do the math the odds arent great.again thanks for taking the time to reply n stay in touch.....love majella

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