Scared, confused, and in need of some advice.

Hi everyone, Jenni here! It's been almost a year since I was diagnosed with CIS. With just this level, I have run into more frustration and confusion that I can't even imagine what women with far more advanced stages are going through on a day to day basis. l truly tip my hat to those brave lovelies. I think my posting will be a combination of asking for advice and venting. Ready? Here we go! Lol. After having my son in January of 2012, I followed up with my OB/GYN the usual 6 weeks after. He did the usual PAP and all that fun stuff. The PAP came back with abnormal cells which I already knew from 4 years before when my ex gave it to me. He pretty much passed it off as me having cheated because he could just never have such a dirty thing and pass it on. Wonderful guy, right? Over the years I have had countless Colposcopies, biopsies, and exams. Many tears, many anti-depressants, and many unanswered questions later, I am here. Back in Feb, my doctor's nurse called me and said that they wanted me to come in ASAP for a Colpo and punch biopsy. Looking forward to that as much as a trip to the dentist, I went. During that time, I didn't realize that my Medicaid had lapsed. It was a long road to get it reinstated. When it was, more biopsies and colposcopies followed. When I got a call back from my doctor himself and not his nurse, my heart dropped to my stomach. He told me that I had CIS. My world crashed. He told me that he was going to schedule a Conization and the surgical dept would be getting back with me. A few days later, they did. It went from being a Conization to a LEEP with no general anesthesia. My body does not accept local anesthetics. When I called my doctor to find out why the change and what was going on, he sounded frustrated. He had dealt with my insurance himself and fought a losing battle. His insurance staff even called my insurance and was only met with more red tape and walls. I needed the Conization and he even told them that it was the procedure that would be most effective. He even told them about my body not taking to locals. The insurance told him to start with the least invasive and least expensive surgery and that general anesthesia would be costly in this case and locals would have to be used. I asked him if I should see a Gyn/Onc and he took great offense to this. He told me to trust him and that if it were anything he couldn't handle, he would've referred me. I felt even more scared than I did before. Because he had done such an amazing job with the delivery of my son, I didn't want to offend him to the point of not wanting to help with the next child's delivery. Probably wrong thought, I know. I went through with the LEEP with the local. My doctor wrote me for 1 Xanax to take an hour and a half prior. I did this but it didn't seem to do anything but make me feel weird. I was still terrified out of my mind! The surgery began at 9:30 am on July 3rd and as I had told them, the local didn't work!! I felt every bit of it. He asked if I wanted him to stop. I asked how much more he had to do. He told me it would be another 10-15 minutes. I told him that I didn't want to have to go through this again and to just go ahead with it. It was the most excruciating feeling I've ever felt. Labor was a walk in the park. I stayed in bed for a couple days and then I was ready to get up and get out. I work as a firefighter/EMT. We had a busy week which was good for keeping my mind busy but I bled and cramped so bad. A few days later, my doctor called me personally. I felt sick. He told me that all margins had come back clear except for one. It's now 6 months after surgery and I was back in the stirrups. Again. I was told back in July that I would need another punch biopsy in 6 months. I expected this and in anticipation of the cramping, I took a muscle relaxer. I am in no way addicted to pain medicines and will actually avoid them if I can but the cramping I get afterward is horrid. My fiance who has been my rock during all of this came into the exam room with me for the biopsy. My doctor came in and told me the plan for the day was to perform an ECC (endocervical curettage) which is supposed to be a deeper and more diagnostic biopsy. He didn't really explain it but did tell me how it was going to be done and what to expect. He put in what I think he called a ring or something like that to open my cervix so that he could get a tissue sample. The pain surged through my body (I'm certain that I have a sensitive cervix from all of this. Has anyone else had that since being diagnosed? It's severely tender) and my fiance held my hand and rubbed my head. It's amazing how great a small gesture is. Within just a short moment, it was over. I have been bleeding and cramping pretty heavy since. I'm on Mirena and this little nasty IUD seems to like playing popup surprise with my cycles. I'm not sure if the procedure caused the Mirena to cause a period, but it's very dark (almost black) and the cramps are intense. In my experience in EMS, I know that dark (blackish) or brown blood usually indicate decayed blood or blood that has not received oxygen. I called the office today and left a voicemail. His nurse called me back and she is truly an angel. Everytime we talk, she has words of encouragement, that I need to be strong. She has been able to calm me down after receiving hard news and to prep me before receiving it. She said that the ECC was negative but almost seemed unsure of what all to say. When I asked any questions, she answered them as best as she could but it seemed like she didn't have all the results yet. She told me they would have a much better idea once the results of the PAP come back. For some reason the pathology was quicker coming back than the PAP. I'm hoping by tomorrow or Wednesday they will know everything for sure. I told her today that since my mom was a nurse, she wanted to have copies of my records starting from the post partom checkup where they did the first test to the results of the ECC/PAP done on Thursday. I told her that since my mom worries and knows that I have a habit of polishing bad news and leaving out the bad parts to keep someone from worrying, that it would keep her from worrying and to prove to her that what I had been telling her was true. The nurse laughed and said that she understood and that I would just have to remind her when she called back with the full report. I can get it faxed to my work easily. My mom said that she would review it, have my PCP who is a close family friend and used to specialize in oncology reports. If he finds that it is anything that raises even a hint of a concern, he will write the referral for me to go to a Gyn/Onc right away. I am confident with my doctor but at the same time, so much of what he has told me has contradicted so much of what I've read in medical reports online and in publishings by doctors. It's pretty much been 12:1. He told me that CIS isn't cancer but the reports and publishings by other doctors and even the CDC refer to it as cancer but in an early stage. I was also told by him and his nurse that going from a punch biopsy (ecto or exocervical) to an endocervical biopsy doesn't mean it's spread. Yet I read and have even been told by someone that went through this that it definitely DOES mean it's spread. She said that hers was CIS on the exo but on the endo, Stage 1b was discovered. In my research, I also found that in a lot of cases, going to a deeper tissue collection from a superficial one meant the spreading and was considered Stage 1. I know you're not supposed to obsess about online research when you have a diagnosis. That's why I've only read reputable info. I just feel like either my doctor doesn't want me to know something or that he's stumped and doesn't want to admit it because it would show that he doesn't know something. Maybe it really is as he's telling me. He was amazing and pinpoint perfect on my pregnancy and really knows his baby stuff. I know that many of you on here live by the mantra, "Go to a Gyn/Onc!" I just have this weird gut feeling that something really isn't right. From any of you that are still reading after my novel, I can't thank you enough! I just don't know what to do and where to turn. Cancer has never been in my family until now. I know that no matter what the outcome, I'm going to beat this! I'm too stubborn to quit and accept a fate other than living to be an old lady that irritates my husband but we're still madly in love, spoiling my grandchildren, and best of all, to be a mommy. I have personally seen calls that can't even be explained other than a mind over matter situation. I honestly and deeply believe that people have a knowledge of when they are about to pass, that a person's negative or positive attitude can determine the outcome of a terminal illness. Sometimes, yes the disease is too much for their body to take and they eventually lose but it's still a victory because they put up a glorious fight and didn't take their fate as the only answer. I could go deeper into this subject but I've said enough already. Lol. Either way, I know that my work on this earth is nowhere near done. I know that I will beat this. Thank you for reading :) My family has been truly wonderful through all of this but with me being the strong one that is putting on war paint for one hell of a battle, I don't want them to know that I'm scared. I find comfort here in knowing that I'm not alone. That when someone on here says, "I know how you feel," it's not just a pass off. You all really do! This is a sisterhood. I wish we all knew each other on different terms, but we will all get through this together! My love and prayers to everyone :)

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Jenni, thank you for sharing your story with us. I appreciate your concern for your family. I worry about mine as well. I believe you must follow your gut in this situation. This is about your life at this point and although you don't want to hurt your doctors feelings, you must put yourself first right now. Your doctor should be happy to refer you for a 2nd opinion and not threatened by that. His concern should be you first. He won't be you g through all this with you as far as needs for chemo or surgery or radiation so this is a time to think about you. My mom had to give me this pep talk at the beginning if my journey too. Best wishes! Stay courageous!

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Any doctor worth his salt will accept a patient's decision to go for a second opinion. I am the wife, daughter, granddaughter, niece, and cousin of MD's, and they ALL say this. You have enough questions here that you need to get answers, both from your current fellow and from an OB/GYN. Fear not. March forward. Take charge. Of course be gracious, but do NOT be afraid of your doctor or his feelings. Nothing good comes of that route. On the other hand, you have a good prognosis if you act in a timely manner with good professional help. Very best wishes.

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I think it's great that they did an ECC, which they probably did because the margins from your LEEP weren't clear and they wanted to make sure there weren't any left over "bad cells" higher up in the canal. It's pretty standard, don't worry- and the fact that it came back negative is great news. I've heard a lot of people say that CIS and CIN3 are considered the same thing- the cancer cells are not invasive ("in situ" means "in place") so it is not considered invasive cervical cancer- but if it's not removed, it is likely to progress to a more serious, invasive stage. CIS/CIN3 are often treated with LEEP as far as I know. If you have questions, you should be able to feel comfortable asking your doctor! I know it can be intimidating... but that is his job after all. Also, I strongly recommend getting physical copies of all of your pathology reports. Having the concrete information in front of me throughout all of my tests and procedures has been extremely helpful and clears up some of that anxiety about The Unknown. Good luck, and I hope your pap results come back awesome!

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Yes! Get copies of your reports to take when you seek a second opinion. Don't rely on your present doc's office to send them, as ometimes mistakes are made. Also, keep copies for yourself. Good luck.

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Like the other gals said, definitely follow your gut! If you feel it is necessary to get a second opinion, then by all means do it! praying for you!

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I agree with all the posts. I'm glad you Doctor delivered your baby so nicely--heck you did do most of the work! And the ego involved here is amazing. Sounds too as though the receptionist or secretary who talks to you is the people person in the office. I listened to my gut when a doctor wanted to do a D&C, then a cone and finally a hysterectomy because I kept hearing my inner voice saying 'why wait for the ultimate surgery?' She wound up refering me to my gyn/onc and this doctor just looked and said I had cervical cancer! If I didn't listen to my gut I would have had more than Stage1B cancer and believe me that was fun enough! I also had biopsies of the uterus from both the first doctor and the onc--hurt like holy hell! Maybe it's just my age but any doctor who seems to dismiss something that concerns me is off the list of people I trust. And believe me--you have to trust your doctors for everything you need from them. Cancer is scary but there are legions of us here to attest that treatments can cure ours. I'll be thinking of you.

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Thank you all so much! I'm just still at a point of total confusion and as if it wasn't bad enough, today threw me through a complete whirl. The nurse called back today and said the PAP came back clear and that the results across the board were negative. WONDERFUL!!! I felt better but still like something was wrong. I asked her to fax me copies of the reports. She sent them to my work. I called work (a couple hours before I had to be in) and they said they hadn't received them. When I got in, one of the officers with the department handed me a stack of papers with the cover-sheet that had who it was from and to whom. He knew what it was without opening it. I took them into the bathroom and read them. I wanted to cry so hard and lose it. They clearly state that although the NIL are not present, it was positive for squamous present in the endocervical canal. The ECC was positive for CIS in the endocervical canal!! WTF!?!?!?!? How could they not read that?? I am beyond angry. My mother will be getting copies of the reports, she will read over them herself (as was part of her job as a nurse) and our family doctor is a personal friend of ours and will be reading them. She already called him and he said bright and early Monday morning, he is going to read them and get on the ball. He said that if my OB/GYN doesn't want to write the referral, he certainly will! He will be able to dumb it down for us to understand and isn't the kind that will sugarcoat anything. What's worse, I found out that with even low grade lesions, you aren't even supposed to have Mirena. My OB/GYN was insistant on me getting it. I have heard of so many complications with Mirena and lesions/HPV/cervical cancer. Has anyone ever heard of this?

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That is unacceptable. People may think I am insane, but every time I am in the doctor's office I look through my file folder before the doctor comes in. I ask a million questions too.

I do believe any kind of hormonal contraceptive may affect lesions/HPV. My doctor has even mentioned something to that extent. I have done a lot of research on women's folate levels and how they are depleted from the use of hormonal contraceptives. I had been taking oral contraceptives for roughly two years before my abnormal pap and CIN1 biopsy. After my biopsy I decided to try taking large doses of folic acid in order to reverse my mild dysplasia. By October 1, 2012 my pap had reverted to normal. My latest pap on Jan 2, 2013 was also normal. I understand that CIN1 has a HUGE regression rate. However, my regression rate happened in the matter of 10 weeks. I am still using oral contraceptives, but I make sure to take my folic acid supplements daily.

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This might be a stupid question, but is it possible that you are reading the results of the original, pre-LEEP tests? I have read reports in the past that stated the original, past diagnosis- moderate dysplasia- and been confused, thinking it meant I have dysplasia again when in fact the current pap was normal.

I hope you get some clarification ASAP!

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