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  • Dysplasia again after LEEP...worried

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    Old 12-20-2007, 05:31 PM   #16
    BE 123
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    Re: Dysplasia again after LEEP...worried

    tigerlilyx61, was this the University of Alabama or University of Arkansas, and do you remember the name of the study and/or the name(s) of the overseeing doctor(s)?

    It sounds like they used a vitamin A suppository which is like a "mild chemotherapy" of the cervix. It sloughs off the bad cells in the hopes that new cells will grow in place.

    I'm glad to hear it worked for you and thank you for sharing.

    One more question: you said they took cone biopsies? Do you mean regular biopsies because cone biopsies are reserved for dysplasia or cancer inside the cervical canal?

    Thanks.

     
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    Old 12-20-2007, 06:16 PM   #17
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    Re: Dysplasia again after LEEP...worried

    Thanks to everyone who has responded. I sometimes feel like I am on my own about this because my parents make SUCH a huge deal out of it. I am still home frequently as I am 22 and I sometimes feel like they think this is my payment for having sex because they don't believe in premarital sex. I haven't told them about my latest abnormal because I know it will be a huge fiasco. Thank you very much for all the ideas and support...it really means a lot!

     
    Old 12-20-2007, 06:26 PM   #18
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    Re: Dysplasia again after LEEP...worried

    The study was at the University of Arizona. As far as the biopsies go I don't know. They just told me they were cone biopsies. Maybe things have changed in the last 25 years but my understanding of the cone biopsy is to get a sample of tissue deeper than superficial epithelial cells because you can't really tell how far the dysplasia cells go down. So in my eyes it would make sense to get a cone biopsy. And then again maybe this particular study mandated that they do this. Who knows

    OK I just dug the report out...yes I still have it after 25 years. It looks like the docs name is Surwit but who knows if he is even alive. I hope that doesn't sound too mean. But honestly I think I maybe saw him twice the whole time. Usually it was his nurse Vivian who I saw. The used 1 cc. 0.372% TRA cream in a cervical cap. I think the TRA stands for transretinoic acid or something like that.

    Last edited by tigerlilyx61; 12-20-2007 at 06:44 PM. Reason: addition

     
    Old 12-20-2007, 09:44 PM   #19
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    Re: Dysplasia again after LEEP...worried

    If vitamins works then why don't we know more about it or why isn't it offered as an option to healing, I mean it makes sense that something like that would work?

     
    Old 12-21-2007, 08:07 AM   #20
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    Re: Dysplasia again after LEEP...worried

    Quote:
    Originally Posted by tigerlilyx61 View Post
    The study was at the University of Arizona. As far as the biopsies go I don't know. They just told me they were cone biopsies. Maybe things have changed in the last 25 years but my understanding of the cone biopsy is to get a sample of tissue deeper than superficial epithelial cells because you can't really tell how far the dysplasia cells go down. So in my eyes it would make sense to get a cone biopsy. And then again maybe this particular study mandated that they do this. Who knows

    OK I just dug the report out...yes I still have it after 25 years. It looks like the docs name is Surwit but who knows if he is even alive. I hope that doesn't sound too mean. But honestly I think I maybe saw him twice the whole time. Usually it was his nurse Vivian who I saw. The used 1 cc. 0.372% TRA cream in a cervical cap. I think the TRA stands for transretinoic acid or something like that.
    tigerlilyx61, thank you so much for digging up that old report. I'm going to broach this with my naturopath over the holidays. I hope to try the TRA cream or even the 5FU (Efudex, another topical chemotherapy agent) if herbal suppositories don't work (provided it's still LSIL). Failing that, I will undergo leep.

    I looked up your doctor and he is a VERY well known and published gyn-onco, and as far as I can see, still alive (and practicing).

    What is a "cervical cap?" Is that like a diaphragm? (sorry, I have only used condoms, the pill, and NFP for birth control and don't know much anatomy) Or is it like a vaginal suppository pushed far up against the cervix? How is it shaped and how big is it? Do you recall having any discomfort or bleeding during therapy? (some women do, but I think fairly uncommonly)

    AlexaIn2006, thank you for posting that regimen. I have a lot to discuss with my naturopath and I'll let you know what she says about that. I don't know why doctors never mention this--I imagine perhaps because most MDs don't believe in this "holistic mumbo-jumbo", since there aren't any peer-reviewed scientific journals proving this works, and/or the leeps make too much $. But, back in the 80s, they used to use transvaginal 5FU cream for cervical dysplasia, with as I recall good results.

     
    Old 12-21-2007, 05:20 PM   #21
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    Re: Dysplasia again after LEEP...worried

    Glad I could be of help. Yes a cervical cap is just like a diaphram. Good luck to you.

     
    Old 12-22-2007, 09:21 AM   #22
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    Re: Dysplasia again after LEEP...worried

    tigerlilyx61, do you recall experiencing side effects to treatment (irritation, infection, etc) or did it go smoothly?

    And you have consistently had clear paps and negative HPV since?

    I'm SO glad you came to share--thank you again.

     
    Old 12-22-2007, 03:03 PM   #23
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    Re: Dysplasia again after LEEP...worried

    Well, on the report it says I had no side effects other than the cap fell out several times. Tee-hee. I do remember it being quite messy.

    Yes I have had negative paps ever since. Is dyspasia always caused by HPV? Back when I had it I don't think I had ever heard of HPV. Of course I know it's a huge epidemic now but they never tested me for HPV.

     
    Old 12-22-2007, 03:31 PM   #24
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    Re: Dysplasia again after LEEP...worried

    I think the thing we need to understand here is that there is no magic about healing ourselves. If you body is consistantly off because of stress, nutritional or vitamin deficiences then, yes, you will get abnormal paps again, or cancer, whatever the case is. You need to keep yourself healthy. You can't take vitamins and make it go away and expect to stay that way from then on, you have to upkeep yourself. I hope that makes sense. When using natural ways of curing yourself like herbs, vitamins, your only side effects may be from an allergy. There are no chemicals.

    No, dysplasia is not always caused by HPV. I am HPV negative time after time and yet I am abnormal. It is a major factor I believe, but isn't always the culprit. The way I look at it, I probably did this to myself. This is my nody telling me I need to be more healthy and that I am off balance inside and I need balance in my body and I need to figure what I am deficient in that would cause this so I can heal.

    Last edited by AlexaIn2006; 12-22-2007 at 03:42 PM.

     
    Old 12-22-2007, 03:39 PM   #25
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    Re: Dysplasia again after LEEP...worried

    Medical doctors do not study and learn about anything other than drugs or surgery for treatments. Many of them will dismiss you if you tell them about curing yourself of cancer or some other disease. They may even suggest that you were misdiagnosed in the first place or it was a fluke thing that it went away. Not all doctors are like this, but most are.

    Just a side note, doctors don't sell herbs and can't make money off of vitamins for the most part, it just isn't what they do. So, if you want to seek drugs and have biopsies and surgery then seek an MD, Medical Doctor. If you want to try helping your body heal itself, understand how the body can get sick and cause dysplasia and cancer, understand what vitamins, herbs, or teas will help you heal, then seek a ND, Naturopathic Doctor. That is the major difference.

     
    Old 12-22-2007, 04:48 PM   #26
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    Re: Dysplasia again after LEEP...worried

    Thanks ladies.

    To answer your question yes, my gyn-onco said dysplasia is caused by hpv 100% of the time, and that's why he doesn't bother running an hpv test when a pap comes up abnormal, it would just confirm the obvious. But I've read a few anecdotal accounts of dysplasia in the absence of hpv. It may be that hpv is just lying low, undetectable (since tests aren't perfect), but still causing problems. Increasingly evidence is pointing not towards eradication but suppression. That's not the same thing.

    If hpv is so common, but has such devastating potential (not just cervical, but many other types of female cancers as well), health care providers are doing a major disservice by dismissing it as "ubiquitous" and "easily cleared by most people." Two of my ob-gyns were incredibly dismissive and only the gyn-onco took me seriously. Mine is hrhpv (may also have lrhpv? not sure, hope not) and has been around 13 months causing problems, and I sure don't feel reassured by those words right now.

    Last edited by BE 123; 12-22-2007 at 04:49 PM.

     
    Old 12-24-2007, 04:34 PM   #27
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    Re: Dysplasia again after LEEP...worried

    Quote:
    Originally Posted by tigerlilyx61 View Post
    Well, on the report it says I had no side effects other than the cap fell out several times. Tee-hee. I do remember it being quite messy.

    Yes I have had negative paps ever since. Is dyspasia always caused by HPV? Back when I had it I don't think I had ever heard of HPV. Of course I know it's a huge epidemic now but they never tested me for HPV.

    tigerlilyx61, I think this is the study you were in! Let me know if this is it:
    [url]http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=3818228&cmd=showdet ailview&indexed=******[/url]

    Not a very high success rate unfortuantely (and it never made it past phase II trials), but it looks like you were one of the lucky ones who benefited from a higher dose of TRA (outcome was dose-dependent). Thanks again for sharing and happy holidays!

     
    Old 12-24-2007, 06:10 PM   #28
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    Re: Dysplasia again after LEEP...worried

    Wow brieaukirsch thank you. How very interesting. I didn't realize how many clinical trials he was involved in. No wonder I hardly ever saw him. Thank you so much for looking that up.

    I went back and reread my report to see what the final report said. This was the last biopsy they did at the end of the study. I did have a negative pap but this is what the report says, "a section reveals fragments of cervical stroma covered focally by unremarkable simple columnar glandular epithelium but mostly lined by nonkeratinizing stratified squamous epithelium. The squamous epithelium is well-ordered and shows evidence of maturation. The cells at the surface, however, are minimally atypical with larger than expected nuclei. There is no evidence of malignancy. Diagnosis: minimal cellular atypia."

    I don't know if maybe they considered this too not be cured or what. I continue to have normal paps and have had 3 normal pregnancies producing 3 normal healthy (and beatutiful I may add) children

     
    Old 12-25-2007, 07:07 AM   #29
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    Re: Dysplasia again after LEEP...worried

    Quote:
    Originally Posted by tigerlilyx61 View Post
    Wow brieaukirsch thank you. How very interesting. I didn't realize how many clinical trials he was involved in. No wonder I hardly ever saw him. Thank you so much for looking that up.

    I went back and reread my report to see what the final report said. This was the last biopsy they did at the end of the study. I did have a negative pap but this is what the report says, "a section reveals fragments of cervical stroma covered focally by unremarkable simple columnar glandular epithelium but mostly lined by nonkeratinizing stratified squamous epithelium. The squamous epithelium is well-ordered and shows evidence of maturation. The cells at the surface, however, are minimally atypical with larger than expected nuclei. There is no evidence of malignancy. Diagnosis: minimal cellular atypia."

    I don't know if maybe they considered this too not be cured or what. I continue to have normal paps and have had 3 normal pregnancies producing 3 normal healthy (and beatutiful I may add) children
    Hi tigerlilyx61, are you sure this was it? (the dates match, right?...1986) I only ask because there were several TRA studies in the 1980s and early 1990s, and Surwit led most but not all of them. Hmm, maybe I will try to contact him.

    Your last biopsy showed a small portion of extremely mild (as in ASCUS or less than CIN1) remnants of hpv activity in the enlarged nuclei, what they call koilocytosis now. I think your treatment allowed your immune system to take care of that.

    Tears almost came to my eyes when I read your last paragraph. Am I to understand you did not experience hpv recurrence during your pregnancies or immediately after delivery? (Pregnancy lowers the mother's immunity a lot) There's some question about whether it is ever really "cleared" and I think for some people, it is, but for most people, it's dormant and not causing problems. I wish it could be eradicated for everyone, I didn't realize how potentially serious it could be!

    THANK YOU for such a happy Christmas post and be well!!!

     
    Old 12-25-2007, 05:59 PM   #30
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    Re: Dysplasia again after LEEP...worried

    Merry Christmas to you too brieaukirsch

    What kinds of problems might I have experienced during my pregnancies? I went online to research but didn't find much. The only thing I had happen was the delivery of my first daughter at 36 weeks. They treated me prophylactically with my secong child assuming it was a strep B infection. But that was it.

    I don't know too much about HPV but if it is a matter of having a healthy immune system to clear the virus it might make sense that I got it when I did. I had just had a pap in August in Pa. before my boyfriend (now my husband) moved to Az. in December. Then I had another pap in May because I wanted to get established with Family Planning out there. That is when the abnormal pap occurred. I was 19 and 2000 miles away from ALL my family and friends so I am sure I was stressed. I remember crying myself to sleep. But as I was treated for the dysplasia I got a job and started to make friends and adjust to life out there. Started to feel less stressed. I also quit smoking in 1990 and for a period of time starting around 1983 started to exercise. I am going to ask the nurse practitioner who I see about all this as far as the HPV goes.

    Keep me posted as to what happens with you and...all the best!!

    Last edited by tigerlilyx61; 12-25-2007 at 05:59 PM.

     
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