CancerCompass message board discussion started by kathryn73 on 3/7/2008 http://www.cancercompass.com/message-board/message/all,21772,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I found out today that I will need to undergo the LEEP procedure because I have severe displaysia (cin III) cells in my cervix. I am worried about the sucess of the LEEP procedure and how effective it is. I am also very concerned about developing invasive cervical cancer, or already having it and they just haven't detected it yet. Never posted a message before anywhere so this is new to me. I am a 35 year old mother of two boys and would give anything for peace of mind. If anyone has advice, or has gone through the same thing, anything...Id love to hear it. kathryn73 Fri, 07 Mar 2008 00:00:00 GMT I had a bad experience with my first doctor, so I can't repeat myself enough.1. Did your doctor show you the lab report and thoroughly discuss the type of dysplasia you have and how extensive it is?2. Did your doctor discuss all four methods of partial amputation (cold knife, cryosurgery, laser, and LEEP) before making a recommendation?Consider getting a second opinion. Should you choose to do that, do it immediately, especially if you have CIN III. It's your body, and you are the best advocate for your health. You want your decisions about what happens to your body to be as informed as possible, and you want the best and most thorough treatment for it possible. herenow Fri, 07 Mar 2008 00:00:00 GMT  On 3/7/2008 herenow wrote:I had a bad experience with my first doctor, so I can't repeat myself enough.1. Did your doctor show you the lab report and thoroughly discuss the type of dysplasia you have and how extensive it is?2. Did your doctor discuss all four methods of partial amputation (cold knife, cryosurgery, laser, and LEEP) before making a recommendation?Consider getting a second opinion. Should you choose to do that, do it immediately, especially if you have CIN III. It's your body, and you are the best advocate for your health. You want your decisions about what happens to your body to be as informed as possible, and you want the best and most thorough treatment for it possible.My doctor sent me an email with the lab results, which I then looked up online and discovered what the degrees of cin are. I have all 3 in my cervix, I, II, and III. Two areas were biopsied a week ago Thursday. Ive had my doctor for many years now, he was my doctor through my pregnancy with my second son who is almost 5 now. I asked about the difference in cryotherapy vs. the LEEP and he told me he preferred the LEEP so he could actually send tissue samples to the pathologist.  Did you have cin III cells? If so, how are you now? Thank you for your reply I really appreciate talking to someone who knows something as I feel totally in the dark. kathryn73 Fri, 07 Mar 2008 00:00:00 GMT Hi, I am 27 years old and I also had high grade displaysia and I had a cold knife cone procedure done in November. Which is a lot like a leep.  When the biopsy came back they couldn't tell if they had gotten all the abnormal cells so my DR gave me two choices to keep having paps and biopsies every 3 months or a hysterectomy so being the mother of two boys also, I chose to have the hysterectomy to just get this out of my body I don't want to take any chances. I was very scared when I first found out that I had the high grade displaysia. I didn't understand a lot about it.  I had c-sections with both of my children so I will have to be cut again and I am still a little scared but in the long run I think it will be the best for me. I will keep you in my prayers I hope that maybe this has helped a little anyway. blondegirl Sun, 09 Mar 2008 00:00:00 GMT You have no idea how helpful your email was. Thank you! I have put so much thought into what the "best" decision is regarding something like this. It is so unexpected and totally scary. I emailed my doctor last night and told him that after the LEEP I wanted to schedule a hysterectomy. I am of the same mind as you, I have two boys who need me and I am not willing to risk this getting the best of me. I hope yours goes well, are you getting it done soon? Thank you again. kathryn73 Mon, 10 Mar 2008 00:00:00 GMT I'm glad your doctor emailed you the lab report, but I'm a little skeptical of him. Did he explain anything you might have questions about? Did the report he actually send you tell you whether or not the dysplasia was in the endocervical canal and if the endocervical glands were involved? I'm beginning to think you should get another doctor and a have another, more thorough biopsy done. Before anyone carves up your cervix, make absolutely sure the right procedure has been chosen so that all of it is removed. He was correct in telling you cryosurgery was inappropriate for dysplasia that extensive, and at this point, I don't know that laser would be a good option, especially if the doctor isn't quite sure how extensive the dysplasia actually it. But there are other methods, and if you want a hysterectomy, that should be honored. I'm going to tell you two horror stories. Mine and a woman, whom I shall call "K."1. My first doctor told me I had mild dysplasia with one focal point at the edge of the transformation zone that CIN II. She then said I needed to have LEEP done as soon as possible, within the next two weeks. I asked her about other options, and she refused to discuss them. She also refused to send me a copy of the lab report. Because I was so traumatized about having my cervix violently carved up by an electric knife, I opted to have it done in outpatient under anesthesia. The day before the partial amputation, I called to verify the appointment was still going to take place and learned she was going to do a cone biopsy without telling me and without getting my permission! When I asked for an explanation, she wouldn't give me one, so I fired her. The new doctor did show me the lab report, and said I did not need a cone biopsy because of the type of dysplasia I had and where it was located. I still have that doctor.2. K was told she had severe dysplasia by her doctor, who also did not show her the lab report and insisted on LEEP. Unfortunately at the time, but fortunately later on, he botched the job so badly, she ended up in emergency and, hence, got another doctor. The new doctor took one look at the lab report and was horrified because the endocervical glands were involved! She told the new doctor she had wanted a hysterctomy, from the beginning, because she already had the children she wanted. When the lab report came back, after the hysterectomy, the new doctor and she learned there were two malignant tumors the LEEP completely missed and there was another one in the uterus itself. Had she continued getting LEEP's from the first doctor because of unclear margins, she'd be dead.None of this is to scare you. It's to show you why you need to be as informed about your body's condition and your options. herenow Tue, 11 Mar 2008 00:00:00 GMT  On 3/10/2008 kathryn73 wrote:You have no idea how helpful your email was. Thank you! I have put so much thought into what the "best" decision is regarding something like this. It is so unexpected and totally scary. I emailed my doctor last night and told him that after the LEEP I wanted to schedule a hysterectomy. I am of the same mind as you, I have two boys who need me and I am not willing to risk this getting the best of me. I hope yours goes well, are you getting it done soon? Thank you again. I am glad that I could help! My surgery is next Friday and as it gets closer I get more and more nervous but at the same time I thank god that I will was given the chance to do something about it! I will get thru this just like the c-sections and biopsy! It really helps so much that you can come here and have someone to talk to that is going thru the same things! I was so scared when all of this started I would just go to my doctor and cry but he assured me everything would be ok! I just think in my situation it would be best to have the surgery and just get it over with. I will be out of work for a few weeks so please keep me updated with you. I hope everything works out for you! You will be in my thoughts and prayers! blondegirl Tue, 11 Mar 2008 00:00:00 GMT So your suregery is the 21st? I am really glad that you opted to do it. I asked my doctor if he would please just schedule a hysterectomy at the time of my LEEP and he doesn't want to, yet. He feels confidant that the procedure will be a success. I, however, am much more skeptical especially after all of the women I have talked to. I just don't want to take any chances and on my big fears is that it is worse than they know. Time is of the essence, ya know? I totally agree with you about this website. Ive never been in a chat room or emailed anyone I didn't know, amazing how helpful this has been, to know and talk to people that are going through what I am. Please let me know how your surgery goes, I too will be praying for you. My LEEP is on the 18th....  kathryn73 Fri, 14 Mar 2008 00:00:00 GMT If you're even a remote bit skeptical about what your doctor suggests, get a second opinion. herenow Fri, 14 Mar 2008 00:00:00 GMT  On 3/14/2008 kathryn73 wrote:So your suregery is the 21st? I am really glad that you opted to do it. I asked my doctor if he would please just schedule a hysterectomy at the time of my LEEP and he doesn't want to, yet. He feels confidant that the procedure will be a success. I, however, am much more skeptical especially after all of the women I have talked to. I just don't want to take any chances and on my big fears is that it is worse than they know. Time is of the essence, ya know? I totally agree with you about this website. Ive never been in a chat room or emailed anyone I didn't know, amazing how helpful this has been, to know and talk to people that are going through what I am. Please let me know how your surgery goes, I too will be praying for you. My LEEP is on the 18th....  Yes my surgery is the 21st. It probably wouldn't hurt to have the LEEP done you never know. But I also had that feeling that it wasn't over after the biopsy even though he thought everything was going to be ok. My DR gave me the option of a hysterectomy because the outcome of my biopsy came back and the precancer was in the entire portion they took out and he gave me the choice of having another biopsy or just have the hysterectomy. He suggested the surgery to be safe and I am not having anymore kids which played a big factor. Please let me know how your biopsy goes and what the outcome is. DId they tell you how long it would take to get the results? I wish you the best! blondegirl Fri, 14 Mar 2008 00:00:00 GMT  On 3/11/2008 blondegirl wrote: On 3/10/2008 kathryn73 wrote:You have no idea how helpful your email was. Thank you! I have put so much thought into what the "best" decision is regarding something like this. It is so unexpected and totally scary. I emailed my doctor last night and told him that after the LEEP I wanted to schedule a hysterectomy. I am of the same mind as you, I have two boys who need me and I am not willing to risk this getting the best of me. I hope yours goes well, are you getting it done soon? Thank you again. I am glad that I could help! My surgery is next Friday and as it gets closer I get more and more nervous but at the same time I thank god that I will was given the chance to do something about it! I will get thru this just like the c-sections and biopsy! It really helps so much that you can come here and have someone to talk to that is going thru the same things! I was so scared when all of this started I would just go to my doctor and cry but he assured me everything would be ok! I just think in my situation it would be best to have the surgery and just get it over with. I will be out of work for a few weeks so please keep me updated with you. I hope everything works out for you! You will be in my thoughts and prayers!Been sending warm healing thoughts your way blondegirl!! and katheryn, you are in my thoughts as well.  I hadmy cervix and uterus removed in 97.  Had I not had that done, I wouldn't likely be here today.   Best to you both.  Please post to let me (us) know how you are!! lorilocks Sat, 15 Mar 2008 00:00:00 GMT I have CINIII. I had a LEEP done last March '07. My husband lost his job and I lost my insurance. We're on a new plan now and I wasn't abel to keep my doctor. My new doctor didn;t even want me to come in. He said schedule in a year. I found out he never even got my medical records! My last doctor went over the lab results with me and the margins were not clear. I was refered to an oncologist/GYN and he reccomended hysterectomy. The new insurance considered everything preexisting until this February. I had to really push just to get an appointment for April 18th. Now I have watery blood, low back pain, my vaginal walls that I can see looks like brains!! I have painful sores around my urethera where I pee. It looks like polups or something all over too. My old doctor wasn't too concerned. He tried to look at it with the forcepts in. I was frustrated when he said every women has folds. I know my own body and it is changing fast. That was a year ago and now it's rough and lumpy all over. It's getting sore too. Sex is painful. Some days are better than others, and at times it's excrutiating. Good thing the lights are out, because I feel guilty crying.. but I hate ruining it for my husband with all my pains all the time. Now I fear having to have all of this to be removed. I know my husband would still love me, he's a great man, but I just won't feel like a woman without a vagina! I would rather loose it though, than die. My children need me. I really am not ready for that. I just have a really bad feeling about all of this. Julie jewelz Wed, 02 Apr 2008 00:00:00 GMT you're in my prayers Julie.  I am assuming from your description that you have HPV that is active.  I will Keep my fingers crossed for you.  Letus know what the new Doc has to say!  Best wishes, Lori lorilocks Wed, 02 Apr 2008 00:00:00 GMT On 4/2/2008 lorilocks wrote:you're in my prayers Julie.  I am assuming from your description that you have HPV that is active.  I will Keep my fingers crossed for you.  Letus know what the new Doc has to say!  Best wishes, Lori Thanks Lori, This is so nice to have other people to talk to about this that understand. I'll post after I see the doc on the 18th. jewelz Wed, 02 Apr 2008 00:00:00 GMT  On 3/15/2008 lorilocks wrote: On 3/11/2008 blondegirl wrote: On 3/10/2008 kathryn73 wrote:You have no idea how helpful your email was. Thank you! I have put so much thought into what the "best" decision is regarding something like this. It is so unexpected and totally scary. I emailed my doctor last night and told him that after the LEEP I wanted to schedule a hysterectomy. I am of the same mind as you, I have two boys who need me and I am not willing to risk this getting the best of me. I hope yours goes well, are you getting it done soon? Thank you again. I am glad that I could help! My surgery is next Friday and as it gets closer I get more and more nervous but at the same time I thank god that I will was given the chance to do something about it! I will get thru this just like the c-sections and biopsy! It really helps so much that you can come here and have someone to talk to that is going thru the same things! I was so scared when all of this started I would just go to my doctor and cry but he assured me everything would be ok! I just think in my situation it would be best to have the surgery and just get it over with. I will be out of work for a few weeks so please keep me updated with you. I hope everything works out for you! You will be in my thoughts and prayers!Been sending warm healing thoughts your way blondegirl!! and katheryn, you are in my thoughts as well.  I hadmy cervix and uterus removed in 97.  Had I not had that done, I wouldn't likely be here today.   Best to you both.  Please post to let me (us) know how you are!!Thank you so much for all of your thoughts! The surgery went well and my margins were good!!!! I am so happy and can finally breath! I really appreciate your support it is so nice to have people who have gone thru the same things to talk with! I hope that all of this is over with now! I am still really sore since I had to be cut again but it was worth the pain. It was worse than my c-section because the dr said I had unbelieveable scar tissue and it was a good thing that I didn't have anymore kids. Thanks again for all of your thoughts.   blondegirl Tue, 08 Apr 2008 00:00:00 GMT Hi Julie, I haven't checked this site for quite a while. After I had my LEEP I found out that I have adenocarcinoma in situ in my cervix. Totally unrelated to the CIN III. I am scheduled for a hysterectomy on May 13. I hope you are thinking positive and I am sending positive thoughts your way. What a scary and unpredictable time for us huh?  Please email me if you want to talk, vent, cry, celebrate, whatever. I am thinking of you. Katie   kathryn73 Thu, 17 Apr 2008 00:00:00 GMT