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    Old 04-06-2004, 04:43 PM   #1
    iffer
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    Knowing poss too much is really scaring me

    Hi,

    I am writing because I am terrified and would really appreciate a comment on this. I have just been told I have a high grade lesion on my cervix requiring the LEEP procedure. I am freaked out because I realize I am one step away from cancer possibly. I am also scared because this is my second time with abnormal cells with this last time being high grade. I know this is NOT CANCER however, what I want to know and cannot find, is what is the incidence that I may ever end up with cancer even though I have regular paps?

    Supposedly, I was told that the cell turnover for cervical dysplasia and cancer is slow growing. I cannot understand than, why 14 months ago, my pap was completely normal and then all of a sudden high grade. I am so worried, that if my first abnormal pap 6 years ago was moderate dysplasia and now this time it is severe, what is the chance I won't have cancer next time??? I am in my early thirties and have had two kids in the last three years, could this have put enough stress on my cervix to cause changes??

    Could this leep procecure get rid of all of these cells for good? or am I in that 10% reccurring population that is HPV pos.

    I am really scared, usually I am the laid back rational one, and now I feel like I have lost it. Really, it's like my life is flashing before my eyes.

    Is it true poss, that multivitamin usage could prevent reocurring illness? I am dumbfounded because I am trying to figure out why the bad cells now, Is it because I am a stay at home mom? is it because I am running 3 miles a day? I should be the healthiest, and now I am not?
    thank you for your reply
    Iffer

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    Old 04-06-2004, 05:33 PM   #2
    Lilyenne
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    Re: Knowing poss too much is really scaring me

    I'm not a doctor, but I am a scientist and I have a pretty good grasp on the scientific literature regarding HPV. I also went from normal to CIS in a short period of time (11 months). When I asked a doctor, he said it was uncommon but not unheard of to progress that quickly. I still think it is very unlikely you will get cancer in the year between paps (it is going to be less than a year now since you should be on a every four month pap smear schedule after your LEEP). My guess is doctors don't know what happens in your case. From what I can tell, they don't even know how often CIN III progresses to cancer - I've read scientific reports stating everything from 15% to 80%. They base the fact that cervical cancer is slow growing on the age differences between women that show up with CIN III versus women that come up with cervical cancer. Obviously they can't chose not to treat CIN III to see if it progresses. In the past (i.e. when our mothers were children) women with severe dysplasia were given hysterectomies. From what I can tell from the scientific literature, your chances of reoccurance after LEEP is 10% if everything goes perfectly (and you do not have glandular involvement). If you have unclear margins your chances of reoccurance are around 50% and with clear margins but dysplasia in your glands the risk is somewhere inbetween. Because this conservative treatment is fairly new, I don't think they know what happens long term (5+ years).

    They also don't know what happens with HPV. If you have CIN III, you probably have HPV (80%+ chance). Some think that your body clears the virus, others think it is more like the herpes virus and you will always have it. I tend to believe the later. Cases like yours tend to support this position. I know that cervical dysplasia that shows up in your 30s when you have been monogamous tends to be the more aggressive strains.

    As far as why this is showing up now, I'd bet on the pregnancies. During pregnancy the immune system is downregulated to allow the growth of the child. Think about it, if your immune system didn't get downregulated during pregnancy, you wouldn't be able to carry the child because your immune system would attack the baby as foreign. It is well established that dysplasia increases during or following pregnancy. As far as the multivitamin, I don't think they know if it helps. There is evidence that folic acid, indole-3-carbinol, and vitamin A may help. However, it appears that these studies are inconclusive. Last week there were reports that sun exposure causes more problems with HPV. They aren't sure if condom use helps in monogamous relationships - there is some literature that even people in monogamous relationships have higher dysplasia regression when they use condoms (they didn't study CIN III because you can't ethically take a wait and see approach). For a virus that has been around for a really long time, they really don't know much about it (part of this is because the cervical cancer link is relatively new). The only thing they are pretty sure of is that smoking makes this worse. As a nurse, I'm sure you know not to smoke.

    I would think the exercise is good for you and I see no reason why being a stay at home mom would make a difference unless it completely stresses you out.

    I don't know if this has been helpful but at this time, I'm more up on the HPV literature than my gyn. I suggest trying a gyn/onc for your treatment. They should be able to answer your questions better than a straight ob/gyn.

     
    Old 04-07-2004, 06:31 AM   #3
    iffer
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    Re: Knowing poss too much is really scaring me

    Lilyenne,
    Thank you for your knowledge. I am fearing this HPV with it being I think like the herpes virus, that it will come back again and again, and I will be dealing with this a lot. Hopefully, this all will not effect my chances of cervically carrying a child. I am certainly not done having kids. Thinking of them taking chunks of my cervix brings on that worry. I wish they had an antiviral drug you could take that would decrease the chances of a dormant virus. I still am worried though, and somehow need to get past this. I am still concerned about how fast my cells grew to be a high grade lesion? With you being a scientist, tell me, I know they graded the inital byopsy sample to be high grade, but when they send the leep sample in, isn't that when they are really checking to see if you have cancer, ie:spreading dysplasia??
    thanks
    IFFER

    Last edited by iffer; 04-07-2004 at 06:32 AM.

     
    Old 04-07-2004, 07:13 AM   #4
    csoar2004
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    Re: Knowing poss too much is really scaring me

    Quote:
    Originally Posted by iffer
    Supposedly, I was told that the cell turnover for cervical dysplasia and cancer is slow growing. I cannot understand than, why 14 months ago, my pap was completely normal and then all of a sudden high grade.
    Abnormal cell lesions start as one cell. Since medical providers haven't yet perfected microscopic vision, it is possible to miss a minute lesion during the pap procedure.
    Picture your cervix as a clock face with the oss smack in the middle where the hands of the clock are fastened. When a pap smear is done, a brush or other implement is inserted a little way up the oss (for the endocervical cells) and twirled to gather cell samples. If the abnormal lesion is only one or two cells wide/deep and out near...say..3:00, it would be easy to miss.
    Additionally, a pap smear is aiming to gather 3 types of cells: endocervical, metaplastic, squamous. Through technique, time of the month, other factors, sometimes one of these cell types is missed. The pap is then labeled "inadequate" or "normal but without endocervical cells," and depending upon your provider's protocol in combination with your past pap history, this result may not be communicated to you. Obviously, if the abnormal cells happen to be the missing-in-action ones, there would be a failure to identify the lesion in it's earlier stages. I'm offering you this information in order to reassure you that you may NOT have a very fast growing lesion.

    When HPV is involved, you may very well be dealing with repeat episodes of abnormal paps. Request that your provider have the digene (HPV DNA) test run on your pap smear. Knowing whether or not you have one of the nastier strains of HPV (there are about 6) will give you a better idea as to the likelihood of reoccurence.

    Take a long aromatherapy bath and pamper yourself. Stress is not helpful (easy for me to say, I know).

    best wishes,

    charli
    203/146/146 on the Fat Flush Plan for life and perky. Veddy, veddy perky.

     
    Old 04-07-2004, 07:29 AM   #5
    iffer
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    Re: Knowing poss too much is really scaring me

    thank you charli,

    I am about to cry, because I am so scared. It is a little of everything. It is like I feel now with this HPV it is like I am going from a healthy indiv with no worries, to one who really has to be on top of my health because if not it will end up in cancer. It is like I was just diagnosed with a chronic illness.
    I am also sad about the fact that I am in the middle of this and really feel like the answer to if I have cancer will not be heard until my leep byopsy has been read by a pathologist. I thought, we could rely on just the initial byopsy to tell us, but stories here have proved that wrong.
    I do not want a hysterectomy because I am currently trying to have another baby. Well, at the moment not because of all this. My heart is aching.

    On the flip side, your info was really helpful! You are very knowledgable and I appreciate it. What you said about the pap makes sense how could a small lesion not get missed? and about the time of the month. That is makes soooo much sense. Do you think there is a way for the ob to be more on top of that if they get a pap reading that states what you said above? I mean if they get a pap reading like that, do you think I could just ask her to do a colposcopy? I wish I could get a colposcopy before every pap smear. I feel if things could be caught even sooner, than the proceedures will not have to include cutting the cervix but maybe freezing leaving a better cervix for childbirth.
    What also makes sense, is the last pap smear that was normal was the 6 mo check up after my last child was born, so I could see there being things that could be missed. The cervix is still healing from giving birth, I was breastfeeding therefore with no menstrual cycle.
    I wonder if being on birth control helps prevent hpv outbreaks and bad cells because this is the first time in my life we decided to leave things to god as far as child rearing.

    your info was helpful thank you
    iffer

     
    Old 04-07-2004, 04:26 PM   #6
    tabs2b
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    Re: Knowing poss too much is really scaring me

    iffer-
    once again, we are in the same boat! I felt exactly the same way as you do when I got the news. I've always been extremely healthy, only had two partners, and always have used condoms (can't take the pill). This was such a shock to me! But, I had been very stupid and had not gone to the obgyn in several years--now this. I really wish I had continued my annual visits.

    But reagarding your future pregnancies fear, everything that I have read seems to lean toward the LEEP as being very friendly re: pregnancies. In fact, some doctors claim that labor is easier and faster after the procedure is done!

    HTH.

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    Old 04-07-2004, 07:12 PM   #7
    Lilyenne
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    Re: Knowing poss too much is really scaring me

    I know someone posted about birth control. There is ample evidence that long term hormonal birth control use is a risk factor for developing dysplasia. They don't know why for sure. One camp says it is because women on the pill use less condoms and have more partners. The other camp says that it is because the pill causes a dip in folic acid levels. My husband isn't too happy but I stopped the patch and we are now just using condoms. There is also some evidence that using condoms in a monogamous relationship helps.

    Regarding the LEEP, if you have severe dysplasia, this is probably the most common treatment. If they freeze the cells, they can't send a sample to pathology. There is also some evidence, although not conclusive that LEEP has a better success rate than cryotherapy. With severe dysplasia, you want to make sure that you don't have cervical cancer. But relax, according to the literature, you have less than a 5% chance of being diagnosed with invasive cervical cancer when the doctor doesn't suspect it going into the LEEP (even with CIN III).

    I also read volumes about LEEP and pregnancies. I have yet to have children so this was a huge concern. It seems like a single LEEP causes some preterm birth but it didn't appear that in the paper that said this that the babies of the women had any additional problems. My doctor told me that the women that usually have problems are the one that have had several procedures. Also, even if the LEEP does cause your cervix to be incompetent, the doctors can put a stich in. You just need to make sure your doctor knows you've had the procedure so they can monitor your cervix. The only other problem, which is extremely rare, is called cervical stenosis. This is when the scar tissue from the procedure causes your cervix to close. I think they can reverse it (sometimes) with plastic surgery. Anyway, I don't see why this wouldn't allow you to have children through IVF and C-sections.

    It is so nice to have this site. I agree that going from a perfectly normal 32 year old to having a serious precancerous lesion on my cervix has been scary. It has been especially bad because I always thought I'd have lots of time to have children. My husband and I have already decided to start trying to conceive if my first pap comes back normal. I'm not really ready (I know I should be at 32) but I worry that if I don't do it now, I may not get a chance later.

     
    Old 04-08-2004, 07:51 PM   #8
    iffer
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    Re: Knowing poss too much is really scaring me

    Lilyene,
    Thanks for your reply. I am worried of having cancer and needing a hysterectomy. Its funny, I am 32 as well and am so excited to have a third. You know this whole episode, has made me think of something that appropriately fits what you said about when to start trying to have kids. When I was thinking of having my second, I was concerned about having them 18 months apart, but yet we did it and our second child is a blessing from heaven, don't know what we would do without her. In the last few months we were trying to have a third (not using anything) and yet I was still thinking oh my gosh three kids under the age of 3? now I must be nuts. But after all this has started with me, I realize things happen for a reason and when you get that inkling of an urge to have those kids have them because like you said you never know what is going to come. Thank god I got those two kids in, or else this may be it for me. Although, I still am dying to have more. You bet though, after my first normal pap smear, I am going to get the show on the road again and just try to have that third. Life is too short and your not done till your done no matter what the timing. So hopefully what I just said saved you the agony I always put myself through, should I ? or shouldn't I? ????? take care

     
    Old 04-29-2004, 08:53 AM   #9
    KarensHere4U
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    Re: Knowing poss too much is really scaring me

    Charli, your information has been very useful! Thank you. It answers alot of questions and straight to the point.

    I do have one question for you. If I have a hysterectomy, will that take care of this whole cancer business and hpv business? I am 40 and thru having children. I have two full grown sons. I am going to try and fight this for awhile, but if it becomes a nusence, I rather do they hysterectomy and get it overwith.

    [ removed ]

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    Old 04-29-2004, 07:22 PM   #10
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    Re: Knowing poss too much is really scaring me

    [ quote removed ] A hysterectomy will not cure the HPV. Dang it! You will still need to get pap smears yearly and will still run the risk of an abnormal pap. But your risk WILL be greatly reduced. Dunno if that helps or not
    Quote:
    Abnormal Pap smears indicating vaginal dysplasia can occur following a hysterectomy, but they are very uncommon and occur in less than 3% of cases. The Pap is taken from the vaginal cuff when no cervix or cervical cuff is present.
    best wishes,

    charli
    203/146/146 on the Fat Flush Plan for life and perky to the max!

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