New and Afraid

Hi all,

Not sure how to start off so let's just leap. My name is Rose and I'm new to this site. I have to say it's been very informative and helpful - I've done nothing but read since my diagnosis. It seems like a great place to be.

I am scheduled to have a TAH on June 13th.

My story? I was diagnosed with cervical dysplasia in 1999. It was 'moderate' and they performed the cone procedure and told me afterwards the margins were clean. The "holding your breath" waiting period began and luckily pap after pap came back fine. That is up until last year, in Dec 2004 I again got the dreaded "it came back as an abnormal pap, don't worry it might be nothing - but to be on the safe side we have to do it again in 3 months" phone call.

To make a long story short, I went back again and the pap results were the same. Next came the coloposcopy where the results came back as full range - mild in some areas to severe dysplasia in other areas. My doctor told me we had two ways we could go with treatment 1) try the cone procedure again, keeping in mind that unfortunately I have an agressive form of dysplasia because it was "gone" once and has since returned, more severe this time. Also, if we went for the same treatment, it might return yet again. (I still wonder if they got it all last time?) or 2) opt for the hysterectomy to try to avoid doing this over and over again. (Just a side note: Yes I am aware the dysplasia can sometime reappear in the vaginal cuff, we discussed all possibilities and treatments for that too).

We talked about it and I asked him how many times he thought could they do this procedure before there is nothing left to remove of the cervix and we're at the hysterectomy point anyways... (they took quite a bit last time). He agreed with what I was trying to say - we might just end up at the same point either way. I asked him what he would recommend if his sister was going through this and he said "if you were my sister, you'd be having the procedure done - without question - no if's, and's or buts".

I should probably add that I am soon to be 39 years old and we're finished having children. My periods have also gotten worse as I've gotten older so that is another factor in my thoughts.

He's been my doctor forever, delivered my child, did my mother's hysterectomy, other surgeries, etc. I'm not worried about his competency - but my question is - and no one can really answer it - it's more of a vent and just a nagging thought in the back of my mind constantly... "how do I know that he's not going find more than pre-cancerous cells in my cervix and other areas when they completely open me up"? That thought is never ending and terrifying. If there is a range of mild to severe - who's to say there isn't worse deeper inside?

I don't mean to ramble on and on, but I wondered if there was anyone else out there having a TAH for the same reason? Having similar doubts? I just wish it would hurry up and get here to get it over with.

I apologize for the novel. Thanks to all those who took the time to read my story. Know that it's greatly appreciated.

Rose

Hi Rose,

So sorry to hear everything you've been going through. Making the chioce to have a hyster. is very hard and there is always a chance that things won't turn out like you'd hoped. I made the chioce due to my prolapse problems, even though I had the surgery the doc. told me I have to be careful for the rest of my life because my vagina walls could prolapse. Which would mean another surgery. She said once you have prolapse problems they could always happen again. I didn't like to hear that at all. It's a chance sometimes that we have to take. I feel alot better now, no more pain, no more periods or painful cramps.

Hi Rose,

I also had a bad pap come back as a class 3 - severe dysplacia. I had the cone biopsy like you. The treatment that I had was laser surgery of my cervix. My laser surgery was 8-18-88, and I haven't had a bad pap smear since. I now have a very large fibroid, and severe bleeding that made me become anemic. I just needed to share my story of my class 3. I hope I put your mind at ease a little.

My prayers are with you

Irish Kathleen

Thank you JD and Kathleen for your replies - it's nice to hear there are others out there going through similar things...

It's comforting to know there's someone out there to talk to.

Rose

s Rose

I am so sorry to hear that you are going thru this dilemma right now.

Please heed my advice when I tell you this. It is very important that you at least consult with a gyn/onc on your situation. They are the experts in this field. Use the gyn/onc as a second opinion. I know you have a very good relationship with your gyn, but it is so important that you seek that gyn/onc opinion.

In the event you decide to have the hyst, a gyn/onc should at least be present so that he/she can step in should need be.

Please keep us posted on your progress. We will be here for you every step of the way.

Hi Rose and welcome
We were all scared when we discovered we had to have surgery, so you are in the right place.... I had mine years ago, but not exactly the same kind , I had a TAH . No matter, we all support you and are here to give our advice and support!!! From Reeni

Welcome, Rose!

I agree with Basket that you need to have a gyn/onc, at least as a second opinion if not the one doing the surgery.

Also, you mentionted that you are concerned they will find something else in there. Well, I guess my thoughts are I'd rather have them find it now than a year from now, you know?

I'm having my surgery (TAH/BSO)done by a gyn/onc because I am high risk for ovarian cancer. He has no reason to think anything is in there, other than I am high risk, but he told the nurse Friday (she was running through some of my questions with him) that a vag procedure is not an option for me. He wants to have a good look around in there, take everything out and check it all over. I feel pretty good about that! All of that because 3% of the time he finds something he isn't expecting to be there. I feel good that he assumes everyone might be one of those 3 and checks everyone out!

YOu will find a lot of good information on this site to help you with your decision. Whatever you decide, the sisters here will support you!

Hugs,
Jo

Hi Basket, Jo, and Reeni...

Thank you all for taking the time to respond to my post and for being so supportive.

I had another dr appt today and feel a little better about things. I just wish the date was closer. 3 weeks seems like an eternity at this rate.

Jo - looks like we're about a week apart (you're 6/6 and I'm 6/13?) I've decided to try and adopt your outlook on things... it's going to be a rough road but I'd rather have him taking a close look than just brushing the whole thing off - ya know?

This really is a great site. I've done nothing but read read read!

Again - I wish you all the best and thanks for being there!
Rose

You are Welcome !!!! We are here for you 24 hours a day.. if one of us is sleeping , well, most likely there is another one of us wide awake. I would probably be on this site longer, if it weren't for the fact that my computer is in my dh's bedroom!!!!! From Reeni

I'm glad you are feeling better after your last appointment.
I hate waiting too - but each day it's gettintg closer! Keep plugging along!
Hopefully I will be able to post after mine and before yours and let everyone know how it's going!

Hugs,
Jo