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Unread 11-29-2001, 03:42 PM

Hi, my name is Tina. I am brand new here and I've never worked with message boards so I'm not sure I'm doing this right, so please bear with me. Early this summer, I had my first abnormal pap test. A colposcopy was performed and the biopsy revealed severe dysplasia of the cervix. A cone biopsy was performed by laser a few weeks later at Roswell Park Cancer Institute, a highly respected facility in Buffalo, NY. The results from the cone biopsy showed that the dysplasia had spread into the deep tissue, did not provide any "margin" in the tissue sample removed and was close to invading the glands in the cervix, but did not show any sign that any cells had become cancerous yet. My doctor has recommended a hysterectomy, but said further tests needed to be performed to determine how the hysterectomy would be performed, should that be my choice. I am 40 yoa and have two children. Although I have not had a child in 15 years, I have never ruled out having more, so that is a concern although not my first concern. Through research and talking to several drs, I have found out that pap tests are at best 60% accurate. Pap tests also only take cells that are fairly close to the surface of the cervix. My dr, although recommending the hysterectomy, has given me the choice of "wait and see", meaning a pap AND cone biopsy every 3 mos. In the meantime, I am afraid that the deep tissue cells are changing to cancer and will not be caught with these other tests. Sounds kinda like I made up my mind to have the hysterectomy huh? I am so afraid of what that means and cannot find anyone to talk to about it. The dr gives a clinical account of what will happen but I want to know what REALLY happens to a woman after the procedure. What can I expect directly after the surgery, should I leave my ovaries (which is still my choice), or natural? I also see from reading msgs on here that there may be depression that sets in post-op. It all sounds so dismal....
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Unread 11-29-2001, 06:32 PM

HI Tina,
Welcome !!!! Sorry that you have a reason to be here, but things like that happen to us..
The decision for surgery is yours..all I can really tell you is how it was for me.. I had my surgery in July because of uterine and ovarian cancer.. I had everything out.. from what I hear from the other ladies it is best to keep your ovaries if you are able.. I had mine out and have not had any problems yet.. well a few hot flashes and a few mood swings.. but i had that before so not much different..
Having a hyster is not the end of the world.. ( though i thought so before Its worth it if it means living longer and cancer free...
Come here often.. we want to know what you decide and let you know that we support you in whatever you choose... I have found this site to be a great source of strength... its nice to have someone to talk to who has walked down that road already....
Unread 11-29-2001, 07:02 PM

Hi, Tina!

Sorry you're in the middle of making these medical decisions, but many of us have been there so we know how confusing it all can be. Pretty scary, those statistics about PAP's isn't it? However, my undertanding of the cone is that it is pretty accurate. For many women, the cone is actually also the treatment, but it doesn't sound as if they found clear margins for you. Ask your doctor a lot of questions so you have all of the information you need. I figured it was worth it to have the TAH since I was also concerned that other cells might be growing and that they might be missed. And once in a while you do hear about a fast growing case of dysplasia that went to cancer pretty quickly--it's rare, but it happens. Dysplasia is usually slow to go to cancer, but you just can't tell for sure.

Lots of ladies on pre-op have your very same questions, so it's a great place to hang out and read. I personally feel very much like my old self. A little less energy than I had before, but then again my friends have always said I burned the candle at both ends and in the middle, so maybe I just got to the end of my excessive energy because of my age . I kept my ovaries and glad that I did. My hormones still cycle through as they used to so I feel like I always did. Just no bleeding to put up with.

I know you are going to read about less than perfect outcomes here. Try to remember though that most women do just fine with their surgeries and return to their typical life. Those women come to visit for a while during their time of need and then move on, coming back to visit on occasion. The women who have had difficulties tend to stay around a little longer for the support and companionship, and that's why you might be reading about things like depression. But the majority do great.

We are happy to have you here on the board with us. Let us know how we can help you out. And good luck with your decision-making process. I'm glad that you're being very careful with it.

Unread 11-30-2001, 03:52 AM

Hi Tina, welcome to Hystersisters and also the cancer concerns forum.

All of us girls here have had some type of scare with either pre cancer or cancer. So we know how you are feeling.
The best thing to do is ask questions and be informed before making any decisions regarding surgery. But saying this, when I found out about my dysplasia , I just wanted it out. They seem to have caught yours early , so that is a plus

As for how I am feeling after my hysterectomy well..... I feel great after a few complications ( read my story ) everything is normal. Honestly, having my hysterectomy is one of the best things I have done for myself.

Pre op is a great place to find out about all concerns etc that you may have regarding the surgery. Of course we can help you here as well but there is alot more traffic on pre op.

Ovaries.... to keep or not to keep ? Well I would definately advise keeping them. I have been on both sides of that fence and the ovaries win With hormone questions there is a great place here on hystersisters
THE HORMONE JUNGLE lots of advice and support there with it all.

After surgery you will experience pain that is usually manageable and also you will have to rest for quite a few weeks , doing not much at all. This is your only chance to heal so it is important to follow Drs orders.
Honestly it is not dismal, after those initial weeks of recuperating you usually get back to better than before.
Please dont forget that we are here to support you. Let us know how you are doing , hugs and love to you x x
Unread 11-30-2001, 04:56 AM

Coming here on your way through this journey will help you tremendously.

I am 39 and had a TVH in July for severe dysplasia. Just like you, I wanted to know everything. Knowledge is power. Some people here on the boards have had a hard time with their hysterectomy. I am here to tell you about mine. Honestly, it was OK. Before my surgery, I was on these boards reading every pre-op, post-op and cancer concern thread. I was a basket case. Everyone here helped me, answered my questions, and comforted me! I won't bore you with the details of my surgery, if you're interested you can go to Princesses tell their stories and click on me.

I was in hospital for 1 1/2 days. When I came home, I was pretty tired. I was able to move around fine. 3 days later I was sitting at the pool watching my children.

Now, almost 5 months later I feel normal. I kept my ovaries as my dr. said they looked fine. I don't miss my uterus at all! I still have PMS....and know I'm having my "period" because my breasts enlarge! It's kind of joke with my husband....if my blouse is pulling across the chest a bit, we say, oh yea, I must be having my period!

I don't want to make light of having a hysterectomy but I want you to know that it will be OK. If you have any concerns, come here often. Trust me, you can ask anything....we've all wondered the same things.

I look forward to hearing from you again.

PS When I was a teen, I would go skiing in upstate NY. At P&P and there was another place. Smaller, but oh so nice. I love upstate NY!! We stayed in Chataqua!
Unread 11-30-2001, 05:38 AM

The decision to have surgery has to be yours!! If you have any questions on what to do, it sounds like you have your mind made up, then speak to your doctor because he knows your past medical history, etc. I had my cervix and uterus removed but kept my ovaries because they looked healthy. The doctor made the call during surgery, as I had left it up to him. If you have questions, please take a visit to the hormone jungle. Menopause is a difficult thing for a lot of women and if you could keep your ovaries, and possibley avoid that for now, it would surely help you mentally in your recovery. Whatever you decide, please know that you have found a lot of support when you registered here!! I know that the whole process is frightening, but you will make it through this and we are all here to help you!! If you have any questions at all, we will be happy to tell you our own personal experiences!! Best of luck to you!!

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