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Unread 01-29-2001, 04:00 PM
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Hi Kim, I hope everything goes well with teh doctor and insurance company. It is quite different here, if our doctor thinks that we need a hyster and we are privately insured then we have it asap and the insurance pays up. A few years ago I had an abnormal pap and was having regular yearly paps, one day about 4months before my next pap was due , i had to go visit my dr for a totally unrelated issue and just said to her can I have a pap early. So she did one and it came back that I had CIN3 (precancerous cells on cervix, agressive ones at that) What I am trying to say to you is that mine went from normal to Stage 3 in 8 months and I was about 6months from having cancer. How is that for guardian angels watching over me !! This is nothing to mess with, demand that you have the opportunity to have a hyster best wishes
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Unread 01-31-2001, 12:33 PM
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Well, my doc called me this morning and we talked for 40 minutes. I am not entirely pleased with what he had to say but it looks like I have no other choice at this time.

He will not do a hyster at this point. He needs to get a sample from the inside of my cervix so he can know what kind of hyster I would need if any. By this he means he needs to know if there are abnormal cells and how extensive so he can make a decision about how radical a hyster to do. Minimal disease=simple hyster. more advanced disease=more extensive hyster.

I questioned him further about not being able to get an adequate pap and told him I don't consider and "indeterminant" pap to be normal. He did agree with me on that. I also asked specifically what the cone biopsy showed in 12/99 because he had only said it was "negative" What he said its there wasn't not cancer or precancerous cells but there was "evidence of disease". Which means there are changes that prove my abnormal paps were caused by HPV, which can cause cancer. I may have mentioned that i have 4 or 5 of the subtypes of HPV that are associated with cancer.

I further questioned him about what he planned to do. Here is the plan: under general attempt to locate and then dilate cervix to get endocervical cells. If he is unsuccessful for what ever reason he would do a cone biopsy( I wasn't thrilled with that, I've been there done that and don't care to repeat it.) and then do the tubal. He then would be willing to say there is no way to adequately follow up because of the inability to do pap smears and we would discuss a hyster.

He also said if he has a difficult time dilating me, he would also recommend the hyster, because he wouldn't put me through that every year.

IF he can get the sample with no problem we will re visit this whole issue in a year at my next annual.

So there seems to be no way around not having the possibility of two surgeries within a year.

SOOO not exactly what I wanted to hear but I do understand and trust his decisions. This procedure should be the determining factor hyster or not. All depends on what he finds. I asked him if he felt confident that he could dilate me and get what he wants and he said "I think I can" Guess he really can't say more than that. He said he has seen this "cervical Stenosis" in about 10% of the women he has done cone biopsies on. Part of the problem may be that I don't get my period so the cervix has not had to dilate every month tho let the menses out so it had an opportunity to close with scar tissue.

YIKES Is anything every easy with me?

Sorry so long but I wanted to let you know the out come


Unread 01-31-2001, 10:03 PM
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Kim: Wow, a doctor that would spend 40 minutes with you on the phone is probably valuable. He's also obviously very cautious about doing hysterectomies unless absolutely necessary - that's probably a good thing. Still, in your case, I would think it needs to be balanced against the possibility of two surgeries, which seems to me like a lot to go through. Did he explain why, if he can't get a cervical sample now without cutting you open, that he MAY be able to get one a year from now? That's the part that has me confused. He seems to be pretty sure that it won't be a problem next time.
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Unread 02-01-2001, 01:47 AM
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Let me say first that you are in my prayers and you need to do what you feel comfortable with. Your situation and mine is almost identical! For five years I would have abnormal paps and then they would do biopsy and say it wasnt cancer but just abnormal ceel growth in the cervix. My dr and i decided to just keep an eye on it b/c my dh and i wanted one more child and my dr said anything done to the cervix could affect the ability to concieve easily.Evertime he did the biopsy and culture that would usually clear up the abnomality and i would have a normal pap 6 months later then i'd go back in a year and it would be abnormal again. Finally we had our last baby 3 years ago and last year my pap was normal and this year when i went back in nov. it was abnormal so they did a biopsy and itcame back as severe dysplasia- pre cancer in the cervix. My dr, explained my options ( leep, cone ,hyst) I decided on the hyst. and said to even take ovaries but dr. said that since i was only thirty he wouldprefer to leave them. So we decide since we wanted no more children instead of putting my family through the worry every year or so and myself to go ahead and take out me cervix and the uterus so i wouldnt have anymore periods. One reason we decided on hyst. was because if he went in and did a cone or leep and pathology reports came back from that and showed perhaps invasive he would have to do a hyst. anyway so why go through a possibly extra procedure and also the constant worry of what if thewy missed it and i have a low grade stage of cancer. My TVH was on Jan. 25th ,2001 and I'm home resting and healing. The surgery went smooth ,I had a general, was in the hosp. thurs - sat. Have percocets for pain and also vioxx for some major lower back pain which didn't bother me at all today. Dr. called to day with pathology report and it showed that the precancer was just that - Pre- which means it hadnt invaded the tissue and that i dont have to go through radiation treatments. I am totally relieved. I know that the abnormal cells can come back somewhere else like the vaginal walls, but at least the core of the problem is gone! I can't tell ya what to do,but I can say that i'm at total peace with my decision. My husband and I made the decision together and I know that if he would have been told that he had some pre cancer cells somewhere i definitely would have wanted him to have whatever organ it was taken out if possible!I know that you say you trust your dr. completely, but a second opinion shouldn't have anything to do with trust , it's a matter of seeig if perhaps someone sees something he missed or has a different view about what action might should be taken that you might end up agreeing with after it's explained to you! Sorry that I got so long winded! Didn't mean to! Good luck to you and remember to do what you decide is best for you! Give yourself some time to decide! Take care! ANGELA
Unread 02-01-2001, 07:21 AM
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Thanks for keeping us posted. Your doctor does sound like he is thinking of you, especially with such a lengthy phone conversation! I am glad that you comfortable with him and trust his opinion. I wish you the best...please continue to let us know how things go for you!
Unread 02-02-2001, 09:30 AM
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Thanks again everyone,

Thanks to a wonderful new friend, I have an appointment to see another doc for a consultation {{Hugs to Roz!}}} on 2/ Tuesday. SHe called in a favor and I got in really quick.

i was afraid my doc would be offended if i sought a second opinion but I have talked to his nurse and she says he is fine with it. He wants me to be absolutely sure this is what I want to do. At the consultation I want to find out if second doc thinks this approach is OK. situation is what scares me the most. Since he can't get a pap smear, basically for a year I have had no follow up. SO we don't know if the dysplasia has progressed.

Terry.. DOc said if he can dilate me under general and get the pap this year"usually it stays dilated and future paps are not a problem" But he did say there is the possiblilty for the scar tissue to regrow and we would be in the same position.

I am so much more relaxed today knowing that in a couple days i will have the opinion of another highly respected doctor. Keep me in your prayers. Iwill post Tuesday afternoon about the consult

Unread 02-02-2001, 09:52 AM
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Kim, I think it is a wonderful thing that you are getting a second opinion!! I think that it will really help you mentally! You have had so much put on you and it is understandable that you are not sure of which way to go. I wish you the best! Please let us know what this new doc says!
It's also wonderful that your first doctor doesn't mind his patients getting second opinions...that shows that he cares about them and their feelings!
Unread 02-02-2001, 02:36 PM
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Hi Kim, well I am so happy that you are getting a second opinion. This way you should be able to make a decision on which way to go, by next week. Hope all goes well for you on Tuesday. Love always
Unread 02-02-2001, 10:20 PM
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Hi Kim

I'm so glad that you're getting a second opinion also. I hope this will make your decision easier. Please do let us know how it goes. Good luck on Tuesday!

Take care,
Unread 02-03-2001, 12:07 PM
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Kim: Congratulations on being proactive enought to get the 2nd opinion! I give advice to OTHER people about this, but for myself, I'm actually also in a position of debating about getting a 2nd opinion about some things. So you and others on this board that follow through are an inspiration. I too worry about my doctor feeling "insulted". How silly - we need to be concerned about what's best for US. I think we'll all want to hear how things go with you!


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